Lyme, Now Hepatits C

[Tara]

Hi Everyone,

I am new here and trying to learn as much as i can, but I thought I would ask for help as you must have so much more experience.

To make a long story short....I was sick for 15 months not knowing why, then finally tested positive for Lyme disease.  I was treated with antibiotics for a month, felt ok a few months, then it all came back with a vengeance.  When I went to test again, not only did I still have Lyme, but tested auto-immune as well.  Since insurance would not pay for more treatment...I embarked on Chinese Herb treatment for Lyme. 

I was taking 30-something pills a day!  On week 5 I developed crazy itchiness and noticed my eyes turning yellow.  I stopped right away and went to my doctor and found that my enzymes were completely through the roof!  We figured the herbs were causing a toxic reaction to my liver.  One week later the enzymes fell almost 50% (but are still very high).  In addition he saw a positive for HEP C.  He thought it must be a false positive but tested again, and again positive.

In my journey to cure my Lyme I was doing many acupuncture, B-12 injections, and intravenous Vitamin drips.  My doctor thinks that one of those may have infected me with Hep C.

My test reads as follows:

TEST NAME:  HCV RNA by PCR, Qn Rfx Geno

Hepatits C Quantitation       2170
HCV log10                          3.336
Hep C Genotype       1a

Can you explain what that means? 
How do I know if I have damaged my liver permanently?
Should I ask for treatment?

My next appointment is next week and if you can think of other questions I should ask I'd be very grateful.  Thank you in advance for your advice.

[Scoutdoy]

Just some quick advice. First, it doesn't matter how you got it, you have it. Second, your type 1a, ok which is a blessing in disguise because there is a treatment. Harvoni. Get an appt with a good hepatologist and they will probably do a liver biopsy or fibroscan to see where your liver numbers are and prescribe a treatment. Lastly, your gonna be ok. It's 2015 and there are several cures out there with minimal side effects. I have 19 days left and really have had no side effects except for a serious case of energy boost and my viral load started at 13.9 million. This forum is a great place to be to learn more about this disease. Welcome!

Scout

[gnatcatcher]

Hi and welcome, Tara. Sorry you have been suffering with Lyme disease and your insurance company has become intransigent.

Your Hepatitis C Quantitation (also called your Viral Load or VL for short) shows that you have very little Hep C virus in you. Your 1a genotype responds well to Harvoni, as Scout said.

If the Hep C virus entered you as recently as your doctor thinks it did, it might still be possible that your body will clear it (get rid of it) on its own. A few people do clear Hep C without treatment. Also, the liver is really good at regenerating. If you look at the numbers at the bottom of this post, you'll see that my viral load had reached over 9 MILLION and my enzymes were very high, yet a test after I had been taking Harvoni for only 4 weeks showed no detectable Hep C and enzymes back in the normal range, which meant my liver was working well again. If someone has had Hep C long enough to have cirrhosis, some scarring may be permanent, but that's after having Hep C for many YEARS, not months.

As far as testing auto-immune, Hep C can cause the immune system to "freak out" in ways that can mimic auto-immune diseases. These "extra-hepatic manifestations" (EHMs) are very difficult to distinguish from actual auto-immune diseases. Thus, it would definitely be good for you to be seen by a hepatitis specialist (who could be a hepatologist, an infectious diseases specialist, or a gastroenterologist). That specialist will know what tests to run and will probably reassure you that, now that you have stopped taking whichever herbs were toxic to your liver, you are not in imminent danger where the Hep C is concerned.

Also, your insurance company is likely to inform you that you are not anywhere close to sick enough for it to be willing to pay for treatment. It's a sad fact of life right now that, because Hep C medications are exorbitantly expensive, insurance companies balk at treating all but very ill people. But if your specialist feels you should be treated soon, there are many threads on these forums that explain how various people managed to win their fights to get treated.

Glad you prepare well for doctors' visits. I hope this post mainly lets you breathe a sigh of relief while you wait for next week's appointment.

Gnatty

[Tara]

Thank you both for your reply.
It's been 3 weeks since I started with the itchiness (which I had for about a week)
I also have yellowing of eyes and skin.

Now last night I have begun with liver burning/pain sensation and some nausea and dizziness. My doctor is on vacation and I don't see him till next week.  I'm scared.
Does this mean I'm getting worse or just part of the process?

My #s were

ALP (46-116) First test 184 (5 days later) 148
ALT (12-78)   First test 1772 (5 days later) 904
AST (15-37)  First test 942   (5 days later) 325

As you can see they were super high.  This was 10 days ago.
Just scared at what point I should be concerned about the burning and dizziness.

Thank you

[Scoutdoy]

Ummmmm, those numbers are pretty high. I wouldn't wait until next week to see a doctor. Try to get into one asap. Call a hepatologist.



Scout

[KimInTheForest]

Hi Tara. And welcome to the forums! Sorry to hear you are struggling with Lyme, auto-immune problems and Hep C on top of it all. As Gnatty mentioned, auto-immune problems can be an extra-hepatic manifestation of Hep C. They are also associated with Lyme as well (as are various sensitivities - multiple chemical sensitivity, electrosensitivity, etc.).

Is there an alternate doctor you can see while your doctor is away? Or a walk-in clinic? If not, I tend to think that when the skin and eyes are turning visibly yellow, it's time to go to ER.

Are you on any pills or supplements or natural remedies at all right now? If so, I would stop everything like that unless they are essential to life (like heart medication or insulin or blood pressure meds or something like that). Also go on a strict liver support diet right away - no alcohol, no sugar, no salt, minimal fat, minimal caffeine, no fast food or prepared food. Cook from scratch, eat salads, fruits, veggies, whole grains for the time being. Do whatever you can to unburden the liver.

Your immediate problem is that you are turning yellow. Get another set of blood tests done asap and see what your bilirubin and other liver numbers are. Then after that, the question will be is your Hepatitis C still in the acute phase, in which case your body could conceivably clear it on its own, like Gnatty said. Or has it moved on to the chronic phase (6 months after infection), in which case you will need treatment to eliminate it.

But at least the cure for Hep C is here. You can eliminate this virus with just 12 weeks of pills. I wouldn't worry about permanent liver damage since you have just had it a short time. Many of us being cured now with the new drugs have lived with this virus for decades (about 45 years in my case) and don't have any permanent or irreversible liver damage. That is not uncommon. So I wouldn't worry about that. I would worry if my skin and eyes began turning yellow, and I would try to get some medical attention immediately for that.

best of luck, and do keep us posted on your progress!

kim

[Scoutdoy]

Tara, I agree with Kim, if your turning yellow and are experiencing the dizziness and nausea ... Go to the ER. Don't wait until next week


Scout

[Tara]

Thank you both.  I am not MORE yellow than when my doctor last saw me.
Just the same I guess.  The only new thing was the burning feeling in my liver area and and nausea last night.

I was taking herbs for Lyme but have stopped 2 weeks ago.  Also, I am on a pretty much organic diet and no alcohol etc.
Thank you,

[Scoutdoy]

Tara, if you decide to wait to see your doctor keep these symptoms in mind,   here are the recommendations of when to seek ER treatment with liver problems.


WHEN TO GO TO THE HOSPITAL:
 
Blood in your vomit or stool
 
Difficulty breathing
 
Abdominal pain
 
Confusion or bizarre behavior
 
Repeated vomitIng

Fever




Scout

[gnatcatcher]

Thank you both for your reply.
It's been 3 weeks since I started with the itchiness (which I had for about a week)
I also have yellowing of eyes and skin.

Now last night I have begun with liver burning/pain sensation and some nausea and dizziness. My doctor is on vacation and I don't see him till next week.  I'm scared.
Does this mean I'm getting worse or just part of the process?

My #s were

ALP (46-116) First test 184 (5 days later) 148
ALT (12-78)   First test 1772 (5 days later) 904
AST (15-37)  First test 942   (5 days later) 325

As you can see they were super high.  This was 10 days ago.
Just scared at what point I should be concerned about the burning and dizziness.

Thank you

Tara, with these new symptoms on top of the enzyme numbers, is there a 24-hour nurse line you can call so that you can tell a nurse all of your symptoms and enzyme numbers and get the nurse's assessment of whether you should be seen today?

Gnatty

[Tara]

I spoke to the doctor filling in and they are going to draw blood again today and have results tomorrow.  He said the yellowing is the bilirubin working its way through.

Thank you to everyone who responded and gave advice.  I'm really grateful.  It's really great to have such a place to go for support!

[KimInTheForest]

I spoke to the doctor filling in and they are going to draw blood again today and have results tomorrow.  He said the yellowing is the bilirubin working its way through.

Thank you to everyone who responded and gave advice.  I'm really grateful.  It's really great to have such a place to go for support!

Glad to hear you are getting lab work done today. Good luck, tara!

kim

[Tara]

Hello friends,

Just a note to say that the lab work came back and numbers continue to plummet after stopping the Chinese herbs:

My #s were

ALP (46-116) First test 184 (5 days later) 148  NOW---didn't see on test
ALT (12-78)   First test 1772 (5 days later) 904 - NOW 36
AST (15-37)  First test 942   (5 days later) 325 - NOW 85

Bilirubin is normal.

(Before)
Hepatitis C Quantitation    2170   IU/mL
HCV log10   3.336

NOW
HCV RNA IU/mL         17       <15 IU/mL
HCV RNA,QN,PCR    1.23      <1.18 log IU/mL

The HCV test seems to be different so I'm not sure what that means.
I'm glad the #s are going back to normal, however, I now have a good amount of pain/discomfort in the liver area along with dizziness.  I took the bus half way to work today and got off and came back home cause I was so dizzy.  Perhaps it's just the healing process?  I don't know.  My doctor's appointment is tomorrow.

Thank you for your time and hope you are all doing well.

[KimInTheForest]

That's great how much your numbers have come down, Tara!! How's your blood pressure? Anytime I hear someone say they are having problems with dizziness, I think: low blood pressure. Could be something else of course. But blood pressure is very easy to check - even in one of the drugstore blood pressure booths or with a home machine if you have one.

congrats on your great numbers!
kim

[gnatcatcher]

(Before)
Hepatitis C Quantitation    2170   IU/mL
HCV log10   3.336

NOW
HCV RNA IU/mL         17       <15 IU/mL
HCV RNA,QN,PCR    1.23      <1.18 log IU/mL

The HCV test seems to be different so I'm not sure what that means.
I'm glad the #s are going back to normal, however, I now have a good amount of pain/discomfort in the liver area along with dizziness.  I took the bus half way to work today and got off and came back home cause I was so dizzy.  Perhaps it's just the healing process?  I don't know.  My doctor's appointment is tomorrow.

Tara, thanks for updating us. It looks like your second HCV test was sent out to a different lab than the earlier test (very few local labs do their own HCV quantitation), but both tests first give you the actual count and then the logarithm of that count. It is a very good sign that the second test shows a barely detectable amount. If I understand correctly, you haven't taken any treatment for the HCV, so it may be that your body is clearing it on its own. You'll know a lot more tomorrow, including what may be causing the dizziness.

Gnatty

[Scoutdoy]

That's great Tara, hope your skin and eyes are doing better too! Do you recall which herbal remedy you were taking that made you crash so quickly? I bet you're relieved at how well your numbers bounced back. That's a really good sign



Scout