I have been taking a combination of various antibiotics for almost 8 months now and 4 of those have included iv rocephin.
I have never had a herx that I know of and I am not feeling any better.
Main symptoms are daily headaches feeling like my brain is swollen, neuropathy in hands and feet, neck/back pain, insomnia coupled with extreme fatigue (what a sick joke), tremors, swollen lymph nodes in the groin for at least 6 months.
I realize I have not perfected all aspects of my life in that I am not perfect with my diet every day and I do have stress...BUT, I would have expected something positive in this time frame.
Then I got a call from my LLMD last week saying he wants me to start on Valcyte b/c my hhv6 levels had increased.
I am not opposed to taking a medication if it is necessary and will make me feel better, but I am concerned about adding it on to the Rifampin, Azithromycin, Flagyl, Rocephin among all the other drugs I am currently taking.
My gut is a complete mess in spite of taking strong probiotics regularly...I have diarrhea every single day of my life and have since my first day of taking any antibiotic for this.
I am just wondering if I should quit all antibiotics and just try the Valcyte alone to see if that helps with any of my symptoms.
I'm just looking for some rational thoughts here b/c I am admittedly not rational at all right now.
If anyone is kind enough to respond, God bless you.
Posts: 47 | From Texas | Registered: Oct 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Oh my, I understand your concern. That is quite a hefty abx regimen.
Is this Valcyte anti-bacterial or anti-viral?
Doesn't really matter, it's one more drug that your liver and other major organs have to figure out how to dispose of.
I'll let someone with experience on treating HHV-6 respond. I have very high levels also. Just haven't gone there yet.
Plan to have all viruses tested again in a couple months. Will try to figure out plan of attack then.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Thank you Pam for at least commiserating with me. Valcyte is antiviral. Apparently it can be harder on the body than just valtrex.
It seems I had a fourfold increase in the hhv6 levels from one test to another so my LLMD feels this is important.
I just wonder how important all of the abx are since I've not noticed any changes or herxes.
Posts: 47 | From Texas | Registered: Oct 2010
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Lymeorsomething
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posted
What else have you done for co-infections? Blasting lyme may not do too much until all the bases are covered.
I'm thinking of Bart especially here.
I'm not huge on treating the viruses because I feel their activation is secondary to lyme and co's for the most part. However, you could try treatment to see if it lessens any of your symptoms.
Valcyte can be very though on the liver though. I have only used Valtrex in the past for EBV but it didn't seem very useful.
By the way, I'm over three years into this battle and I have improved but I'm not the old me yet. I just hope the new me finds the old me before I'm too old to enjoy the old me.
Consider too adding a herbal protocol to your abx. I'm using Cowden now.
There is also pulse therapy with abx. This is one option to give your gut a break.
O and if you're not sure on Valcyte you could try a natural. Some find Lauricidan helpful...
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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kidsgotlyme
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posted
Rifampin should cover the Bart or at least it did for my daughter.
While I am certainly not the resident expert on all things lyme around here, it sounds like maybe your body is not detoxing properly.
Do you do any detox?
This was just my first thought as I read your post. Hopefully someone will come along to help.
Also maybe a parasite cleanse, treating with herbs instead of abx?
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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glm1111
Frequent Contributor (5K+ posts)
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posted
In a recent post, GiGi states that Dr. K. says from his Beyond Lyme conference that PARASITES are what does us in and needs to be treated.
He says Lyme is secondary because the worms are carrying the bacteria, fungus, viruses, etc in their coats. In order to get rid of the Lyme you have to go after the parasites.
Most doctors think parasites are a third world problem. Type parasites ino the search bar here at the top for more info.
After 4 yrs of abx, antiparasitic herbs and salt/c are the only protocols that helped me turn the corner.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I personally wouldn't load my body with abx and Valcyte. It is a very strong drug and can wreak havoc with one's liver. I'd do it on its own for a while, then start to add things slowly vs. the other way around.
Honestly, I've only known of one person whom it helped and she was on it for about 3 yrs. Again, need to weigh risk/benefit.
I still think you haven't been in Lyme tx long enough to really make a difference. Good luck, I know we all struggle with this if its any consolation.
Posts: 182 | From hills and valleys | Registered: Jan 2009
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momintexas
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posted
I would do a lot of research on valcyte first.
Timaca knows quite a bit about it - maybe PM her?
My HHV6 levels have been different every time they've been checked. They seem to fluctuate quite a bit.
How high are your levels?
Posts: 1408 | From Tx | Registered: Nov 2009
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map1131
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posted
About a year or two ago after another blood test of all this ++ virus test, I asked my PCP if we should try anti-virals and he said NO.
So I trust him for that answer. But I also have the ability to attack viruses and easier bacteria to kill with my rife machine.
Using rife one must have the right freqs to go after these bad guys. You can be running all the wrongs freqs on your machine and get nowhere with killing them off.
So that's how I can proceed. Probably time for me to do some herb also. I've had more bites since my last parasite cleanse. I'm sure I'm fully of nasty nasty bugs & worms.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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timaca
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posted
tiredmom~ If you've been on antibiotics for 8 months, have never had a herx and don't see any improvements; and you've got increasing antibody titers to HHV-6 then perhaps you are fighting a viral infection, not a bacterial infection.
Valcyte is a strong drug. I'd consider going off the antibiotics then start the valcyte.
Best,Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thank you everyone for input. I don't have my labs here as I left them on my desk at work accidentally but the first was in the 300 range and the second was 1200 something. I had been on valtex for a high ebv titre but that number didn't change much.
For detox I do at least every other day epsom/peroxide baths, liver supplements, ALA, glutathine suppositories.
I just seriously never have any relief or sense that any of this is helping. Then I start to question if I am having some side effects from the abx and gut damage (which I figure is causing the daily diarrhea).
I am too scared to quit all abx, sort of too scared to do anything at this point.
I have not looked into parasites but suppose that is a possible next step.
Thanks again for all of the good thoughts. Sometimes I feel so completely alone especially since I've lost some faith in my llmd. I tend to second guess everything and it is making me nuts!
Posts: 47 | From Texas | Registered: Oct 2010
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posted
I have rotated anti-parasitics Valcyte, Albenza, Biltricide, and Stromectol along with DOXY & Amoxicillan. Felt better for a while but now not doing so good. Slipping back in to more pain and neuro issues.
I haven't had labs drawn recently because I broke my arm and had surgery, now in P/T.
My LLMD recommended Zeolite for detox along with Welchol 4x day and Detoxamin suppositories.
I am also having diarrhea and lots of abdominal cramps that haven't responded to any meds. I'm wondering if it's not C-diff? My PCP took a stool culture and waiting on the results. How is C-diff treated?
Sugar is my main culprit. I don't feel like cooking meals so having something sweet gives me a surge of energy to keep me going.
Oh yes, can we take too much probiotics and what harm will it do? I thought more was better.
Posts: 245 | From Texas | Registered: Jul 2009
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posted
Check out treatmentcentersforcfs.com. This Michigan M.D. has done extensive studies on EBV/HHV6/CMV and Lyme. He has treated using Valtrex and/ or Valcyte, as well as treatment for Lyme if necessary.
Posts: 51 | From Boston, Ma. | Registered: May 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
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posted
Personally, I think Cipro, Levaquin, or Factive are better bart drugs than Rifampin but they come with their own set of cruel sides.
Also be sure to rule out any thyroid issues. They can be very common in females.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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timaca
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posted
tiredmom~ I understand how you feel...it is no fun to be sick....and less fun to not understand which path is the best to take.
I had treated for lyme and had made significant improvements, but then relapsed. I decided to try treating the viruses, and that has made a lot of difference.
You've tried treating the bacteria and haven't gotten any better. You have antibody titers that have increased significantly for HHV-6, which indicates that is likely a problem for you. So, treat that and see what happens.
I would go off the antibiotics just because valcyte is a tough drug (and expensive).
With any luck that will be your only problem and you'll get well. If not you may have to check into enteroviruses, or other pathogens. See: http://chronicfatigue.stanford.edu/infections/
I had HHV-6, EBV, HSV1, Cpn and Coxsackie B infections. It is possible to have more than one pathogen causing a problem.
ladyjenie~ C. diff is treated with vancomycin or flagyl or rifaximin or a combination of these antibiotics. I had C. diff for 11 months. It is not fun. I did get over it, however....with many thanks to the doctor who helped me.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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ktkdommer
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posted
My son has been on Valtrex since day one of his Lyme treatment with ILADS doc. He is at school today. I think viruses played a huge part in his illness. He is doing so many things it is hard to know what helped the most, but my gut says valtrex has allowed him to get out of bed.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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