Discussion in 'Lyme Disease and Co-Infections' started by anncavan, Mar 24, 2010.
Ann, glad to hear you're doing better again after the break. Keep us posted!
I use terms of endearment to open with after reading your and the other journey's on Valcyte and other meds. Unbelievable, I suppose it would be
rather inappropriate of me to mention I was thinking of going to the hardware store for some rope and find myself a good tree. And on top of
all this, a person has to put up with all the controversy and confusion that is out there as to whether most of the described diseases even exist?
I've started another business and almost ready to go into production and I absolutely do not have time for this ("explicative"). Now I know for sure why cuss words were invented,
what else describes the situation, no offense to anyone intended. No kidding, I'm in the midst of building a company (again) and working
at least 6-7 long days a week. This ain't happening, I 'am a year and half into this project and incompletion is not an option. Where is the Devil when you need to
cut a deal. I could walk under a slugs belly and have to look up to see it, I feel so bummed, which I realize in comparrison to others, I don't have the
right and need to grow up and get a grip. Sorry, roger
Here's Dr. Lerner's latest piece of research that outlines his treatment for EBV with Valtrex and HHV6 with Valcyte. To properly address them, he believes you need to be treating them simultaneously. Throw in Lyme coinfection, and he believes you need to be treating the Lyme with abx while also treating the viruses with their antivirals respectively. That's one of the most important learnings he's brought us with the research.
I didn't have trouble with Valtrex. Valcyte herxing kicked in for me around week 4.
It looks like abx treatment of group B (those with co-infections which included Lyme) only lasted for 30 days. Those who argue that many ME patients have chronic Lyme would say that abx treatment needs to carry on for years. Perhaps that's one reason why group B didn't improve much.
Thanks for the info. I had read this paper last week and decided on my own to resume Valtrex along with Valcyte. I have a rx for
about 2 more months worth and I'm scheduled to see my ID in about a month. at which time I will tell him what I've done and he shall
either support my decision, as I have read in numerous other places this is this best way to treat HHV-6 and EBV, or I will move on.
But a question for anyone that reads this post. I have stated in an earlier post that my ID says there is no Herxing phenomenon in viral treatment.
This guy is the one of the very top guys at the top hospital (19 years running) and my question is this, is it possible that this is a case
of semantics and "Herxing" really just describes a poor physical feeling when maybe a medicine reaches a certain level in your system
that it makes us feel poorly? Even Dr. Montoya in his published article in Clinical Virology 2006 refers to it as
"Herxheimer like" reaction. Anyway, day five and I'm already feeling cruddy, oh well, as to abx, as you know, the overwhelming consensus
is that Lyme is treated once or maybe again with a different abx and delivery, but that's it. Maintainance with abx is being offered less
and a lot of docs are refusing to continue them. I'm in the middle, having Lyme and being treated for months and months, at best the
opinions are confusing in their selves.
I believe the statement regarding abx in the paper is something like "treated for 30 days and then assessed." He purposely said this to stay out of the Lyme vs. Chronic Lyme fight. In reality, his approach is 6 weeks of IV abx via PICC line, followed by oral antibiotics until the Lyme is under control (I say that simply because we know that no one is ever "cured" of Lyme). So he is a believer of chronic lyme, but not as aggressive as some (ie. 6-12 months plus of PICC lines). I am in California, so am not under Dr. Lerner's care for Lyme. He doesn't feel comfortable overseeing a PICC unless the patient is in driving distance. Therefore I'm being treated by a Lyme doc out here who believes in much longer IV abx and am following Lerner's protocol for my CFS viruses. Once I have my Lyme under control I'll go back to Dr. Lerner exclusively.
Per Cort's article and discussions I've had with Lerner, it wasn't until they did the data digging that he really understood the Lyme/CFS relationship. Dr. Lerner thinks it's essential that patients are tested and treated for both at teh same time. Those with both do not end at as high of an EIPS as those with just herpes viruses, however they start at a lower grade too. Also, in recent discussion Dr. Lerner feels Lyme treatment has become much more understood and aggressive in the past few years. He feels his CFS+co-infection patients are improving more and more.
Thanks anncavan - that's encouraging!
What abx are you taking for Lyme? I've been on IV rocephin, doxycycline, minocycline, azithromycin, tinidazole, penicillin V, and amoxycillin at various times over the last few years, with no improvement.
anncavan and jenny, Hi!
I would add an addendum to my earlier posts, I have no idea about long term abx's working or not, I did not purposefully contradict
any persons feelings toward the subject, nor that of health care professionals. I will add that I have been on wide spectrum of abxs
including IV and Beta interferon for 11 of the past 15 years. Unfortunately, I have had either no improvement or digressed, but the
explanation may well be in the treatment I received (generally piss poor) and the bacterial and viral infections I 'm blessed with.
Hope nothing but the best for everyone's treatment, being sick sucks.
I only had a low level of herxing on Valcyte between weeks 4 and 6. It was nothing more than a little more fatigued and very low grade nausea, but wen't away after a couple of weeks. I also had the constant bloodwork, but I was also referred to a nephrologist to monitor the bloodwork.
He was very quick to say that the bloodwork that was being ordered was not necessary. I gathered from him that Valcyte got it's stigma for kidney function monitoring from the "organ transplant" use of the drug. Apparently it is used in practically all kidney transplants, other organs as well, as it is one of the "gold standards" when it comes to preventing organ rejection. The dosing may be higher, but the body is much more compromised during this time and for quite awhile afterwards. It's during this time that the kidneys need to be monitored very closely and he went on to say that in his 25 years as an nephrologist that he had encountered one occasion that Valcyte affected the kidneys abnormally and all that was needed was a slight decrease in dosage.
@August59 - i'm happy to hear that you didn't have that tough oof a time with Valcyte! My bad weeks were 4-6 as well. However I have to politely disagree with your/your nephrologist's comments regarding Valcyte. It is very important to be tested every week the first few months, then monthly for liver enzyme levels. At one stage I was doing so well on Valcyte I was bumped up to 3 x 450mg per day. It was too much and my liver enzymes elevated. Usually one would stop taking them for a few weeks and they go right back down. It took me about 3 months before my levels normalized. I believe my experience is a good example of how hard this drug can be on the liver, and why it's necessary to test regularly. My CFS doctor (Dr. Lerner) requires it every 6 weeks.
My white blood count dropped dangerously low and I had to lower my dose.
Hello! My name is Jason and I have recently seen a Lyme Doc here in Arizona who is sold that I have Lyme. I was deathly sick for six months before I saw him. Dr. David Korn, he also has Lyme. Anyway, I recently had a viral blood test done which showed high levels of EBV and HHV6 also. My thyroid antibodies are also very high with a normal TSH, and recent ultra-sound revealed a 5mm nodule in my right lobe. I have had a sore throat for nine months now, which I hope is from the EBV or HHV6. He has ruled out cancer, my blood work comes back all great, except for my cd57 of course(52). Doc says normal is thought by many to be 60-200 but he actually says it should be 200-600. I am floored at the treatment you are getting. The most I've been given thus far is Azithromycin, with a biobreaker of course. It is called Protease which breaks up the biofilm where those little boogers love to hide. Also on an Immune Booster Supplement which he created himself to build up my Immune System which seems to be doing a fine job. I start full treatment for everything in two days!! I am researching the best ways to fight Lyme and it seems to be a Rife machine. My Pastor uses one and my Doc's son sells them, one he made called a GCX. I eventually want one. I am 34 years old and I can't believe this has happened to me but I thank God for keeping me going each and every day. This epidemic needs to be taken more seriously by our so-called leaders of the country. Obama needs to step up and address this disease because it causes so many other illnesses. I hope someone reads this, I am attaching a video of my Doc speaking on Lyme. He is a Lyme expert who almost died from the disease himself. http://www.channels.com/episodes/5048080 Please email me with any info that could help. Thank you and God Bless... email is firstname.lastname@example.org
here is another story on Lyme. Check it out. http://www.naturalissues.com/?p=13
I have just watched a documentary about Lyme called "Under our Skin".
It was hard to watch. Very well done.
What struck me was that how eerily similar the symptoms are to ME/CFS.
For every time they said "lyme" the could have inserted "CFS" and it would have rung true.
Why are these two diseases so alike?
Dr. Korn was the doctor who diagnosed me with CFIDS back in 1996. He used to practice here in Columbus, Ohio. I liked him. A little eccentric, but he seemed to care about his patients. And, the stuff he was doing to diagnose and treat back then, was ahead of his time.
It might be helpful to look at this website: http://chronicfatigue.stanford.edu/
Why no antibiotics? If your doctor and you are sure you have neuroLyme, then antibiotics would be obvious tx. I had relapse into neurolyme with workplace harassment. Developed sx of dystonia in feet, blepharospsm in eyes. Antibiotics turned all that around and it hasn't returned. But it does not help other "soft" sx like cogntivie deficits, sleep problems. I believe those may due to CFS.
You can also try a Google Site Search
Separate names with a comma.