posted
I am slightly high in hhv-6 but very high in EBV. My only concern with valtrex is that it says its not supposed to be taken by people with HIV or people with compromised immune systems.
My immune system is definately compromised. So im a little leary about taking it.
Do you know why they say not to take it if you have a compromised immune system?
SForsgren
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Depends on what you are compromised with I suspect. If it is Lyme, my doctor has me on Valtrex and it has not been a problem.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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timaca
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Joe~ I don't know about valtrex with regard to a compromised immune system.
I do know that one or more of the viruses can wreck havoc on the immune system thus allowing more viruses to become activated. (Viral party in the body!)
I would guess that my immune system is pretty compromised since it appears that I have lots of viral infections going on. Yet, I was put on valcyte, which I understand to be a more heavy duty drug than valtrex.
Do get tested at Focus so you can see exactly where your HHV-6 level is compared to what Dr. Montoya feels requires treatment with valcyte. That will also help you and your doctor decide which drug is best for you.
Timaca
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timaca
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Joe~
Getting tested at Focus will allow you to compare your results to the results of Dr. Montoya's. Different labs use different reference ranges, and more importantly, differently tests. (Like IFA)
If you know your EBV is very high, then you perhaps don't need to spend the money to repeat that test at Focus. Although you could call them to see how much it would cost.
Getting your HHV-6 checked out at Focus, and comparing those results to what Dr. M considers high will help you decide if Valcyte is necessary for you. An HHV-6 of 1:320 to 1:640 or higher at Focus is the cutoff he tends to use.
Best, Timaca
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JRWagner
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up...important!!!
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Truthfinder
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Since IV Vitamin C seems to be effective against many viruses, has anyone considered doing IV C?
Scott, is there some way to ART test to see if IV Vitamin C might be effective?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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timaca
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I have not done IV vitamin C. I would hesitate to do that. It is best to get tested for the viruses at Focus Labs so you know what you are infected with...and can then begin effective treatment.
Best, Timaca
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Truthfinder
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Yes, I think so, too, Timaca. And I'm not sure there has been research on some of these viruses using Vit C - like the Herpes viruses. I have not kept up with that in recent years.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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JRWagner
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People are on Valtrex for extended periods of time to suppres Genital Herpes...
I put myself on it to combat an unreally high EBV IgG. Valtrex was not strong enough, nor did I take it long enough to help.
However, Valcyte is stronger and comes with a caveat. What the heck, we are all guinea pigs on this bus...
Peace, Love and Wellness, JRW
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timaca
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tabers~ I discussed with Dr. Montoya the risks of Valcyte. What I basically ended up telling him is that I didn't have a life...I was too sick to enjoy anything. I was willing to take the risk of the drug. He totally understood that.
So far, I'm glad I did. Hopefully, I'll get all the way well.
I'm not sure that valcyte is all that effective against HSV 1, which I have high IgG antibody titers to. So, I may be taking a different anti-viral in the future to combat that.
JR~ Yes, we are guinea pigs. This is new territory for sure.
Best, Timaca
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JRWagner
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up again...important stuff!
[ 29. January 2008, 11:12 AM: Message edited by: JRWagner ]
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JRWagner
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Timaca...anything new in your progress?
Thanks again for starting discussions on the Viral component of "This Thing of Ours"!
Peace, Love, and Wellness, JRW
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timaca
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Hi JR~
Various bodily tissues of mine are being sent to a major medical facility for research (read: checking for viruses). These tissues were taken from me prior to starting valcyte.
One tissue in particular, a punch biopsy on my leg to look at nerve health, is unfortunately already stained, so is of no use to the pathologist wanting to look for viruses.
We are checking with various scientists as to whether or not I should do a repeat punch biopsy at this stage in treatment. Punch biopsies are painful, so it would not be fun, but it might give some interesting data.
I've not slept well this past week, which has left me more fatigued than usual. I can however, tell the difference between lack of sleep fatigue and viral fatigue, and this is definitely lack of sleep fatigue.
A friend of mine who is 2 months further along in treatment than I also went through sleep problems at about my stage in treatment. Hopefully, it is just a stage and I will get better.
My muscle and joint pain is remarkably less. I still have significant nerve pain (burning, sparking, crawling, tingling nerves) all over my body.
One of the reasons to do a punch biopsy would be to see if there are viruses in the nerves...that is where they like to hang out, so it makes sense I would have nerve issues. I could also have nerve issues because nerves take a long time to heal once injured.
Thanks for asking... Timaca
[ 29. January 2008, 05:14 PM: Message edited by: timaca ]
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JRWagner
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Timaca...PUNCH BIOPSY...OUCH!!!
I assume you are on ABX as well? Lyme bacteria can also effect the nerves. Damn, this thing of ours is life changing nasty.
Please keep us posted...could your friends on the same protocol post their progress as well?
Did you have INTENSE head and neck pain before you started your treatment?
Thanks again!
Peace, Love and Wellness, JRW
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timaca
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JRW~ I agree that punch biopsies hurt!
I am not on antibiotics at this time. The doctor at Stanford wanted me to discontinue them once the valcyte was onboard. The reason being, if I continued to take both, and I got well, and discontinued both, and relapsed, he wouldn't know what made me well.
That coupled with the fact that my WBs for lyme showed fewer bands and my viral titers were high, led me to believe I was battling viruses more than lyme. So after valcyte was onboard for about 5 weeks (long enough to see if it gave me a herx--and it did) I discontinued the minocycline.
My friend posts at the hhv-6 foundation board. Her post name is Brita. She is doing pretty darn well. Even taking a class at the local university...guess what it is? Microbiology!! Gee, I wonder why?
I did have some significant head and neck pain...more headaches, definitely weird pressures in the head that would come and go. More creaky neck then neck pain.
Two weeks into the valcyte I got a SEVERE headache for a night and a day.
If you have lots of head and neck pain you should also check out Arnold Chairi Malformation.
Best, Timaca
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1Bitten2XShy
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Well, I am now hopping on the Valcyte bandwagon. My LLMD thought we just might need to treat that high HHV-6. Feels that maybe that is what is causing the last of my symptoms.
He had me read and sign a form that I acknowledge the dangers that can occur from using Valcyte.
Right now he only has me on 900 mg daily for 30 days and we will see where we are from there.
He also brought up something I have not read or heard, that my chronic sinus crap he feels is from yeast...Go figure...so we are addressing that as well. I have no other apparent yeast signs.
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timaca
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OneBitten2xShy~
Welcome to the valcyte bandwagon. Glad to have you on board!
I have some concerns about what you posted. First, he has you on 900 mg for a month and he'll see how you do. That's well and good as long as he doesn't expect you to feel better in a month. If you have HHV-6 infection, you are likely to feel worse the first month.
Many people don't feel better until 4 months into their valcyte treatment. Some don't feel better until they are off the drug.
So if he takes you off the drug at 1 month because you aren't feeling better, that isn't a good reason.
Also, make sure you are having weekly labs for the first 3 weeks. You need to see how your CBC (especially your WBC and absolute neutrophil count) does with the valcyte. Then do labs every other week for a while, then monthly (I get CBC, UA, and CMP).
Dr. Montoya's protocol is a bit different. He has people on 900 mg twice a day for the first 3 weeks, then dropping to 900 mg daily to complete 6 months.
Best wishes on the valcyte! Do lots of reading at www.hhv-6foundation.org and post on the patient's section there!
Glad your LLMD is willing to treat the HHV-6! Good for him!
Timaca
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1Bitten2XShy
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30 days for now to see how all my BW goes etc, then we will go from there.
He has me testing BW every 2 weeks. Start today, then 2 weeks and another 2 weeks.
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AliG
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I remember Stymie talking about a good antiviral a while back. I don't recall which one.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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JRWagner
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SForsgren
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Here is my recent understanding of some of this and I welcome comments that will bring a more full understanding.
As I understand, if one has a high IgG and no IgM to a virus like EBV or HHV6, you must next look at total IgM. There is a total immunoglobulins test from LabCorp that measures IgE, IgG, IgM, etc.
Then if your total IgM is normal (probably not low normal), and you have IgG but no IgM, that is more likely past exposure and does not warrant treatment.
However, if your total IgM is low, then you cannot look at IgM as you are likely not producing enough and as a result, IgG may then be the only indicator of present infection and thus warrant treatment.
Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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timaca
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Scott~ IgM only appears for a few months after primary infection, and occasionally in acute reactivation in a transplant patient.
So, an adult with a chronic reactivation would not have any IgM. But, they could still have a very active infection going on.
timaca
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Yes, valcyte is pricey. I hope your insurance will cover much of that. I end up paying about $400. per month. A friend of mine pays only $10.00 per month!
I found the following on the Focus Lab website with regard to Varicella Zoster Virus: Single titers >=1:256 are considered suggestive of recent or active infection.
Prior to valcyte, my VZV IgG antibody titer was greater than or = to 1:256. I guess even the lab thought I had active infection going on! Now, I'm 1:16 after some valcyte.
Best, Timaca
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1Bitten2XShy
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Yes, I only had to pay $ 25-. Hoping however, that they will continue to pay each month as needed.
I just was floored and wondered how people without any type of insurance could afford anything like this.
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I have been reading through your posts here and on the HHV-6 foundation at "Lyme Brain" pace and I want to thank you, as others have, for taking the time and energy to share with us.
You mentioned that the onset of your illness began with the cortisone injection and that you were previously very active and healthy...
Just out of curiosity, what was the onset of your illness like - Was it sudden? You mentioned on this discussion the symptoms you first noticed, but nothing typical of a viral infection in the sense that we understand viruses (acutely), correct?
This discussion got me looking over some of my old notes, and I was looking at Dr. T in Maryland in which he discusses viral infections and how they can cause hypothalamic suppression in chronically ill patients.
He goes on to discuss that, "many patients get well w/o antiviral treatment" leading him to suspect that once the immune and hypothalamic disregulation is addressed, the patient improves.
Of course we know there are various mindsets and ways of treating the same pathogens and illness, but I thought I would mention that for anyone who is overwhelmed by the thought of having to institute antiviral along with antibiotics!
Nevertheless, your case has peaked my interest, as I have done oral abx to no avail, and my HHV-6 titers came back positive on IgG from a comprehensive panel originating from Medical Diagnostic Laboratories in NJ.
My LLMD put me on a specific Transfer Factor that is geared towards HHV-6, yet I have not retested since my run taking that.
Look forward to hearing others thoughts/comments -- especially yours timaca!
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timaca
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Hi HamDune~
Three weeks to the day after the steroid shot to my knee I experienced extreme dizziness (I had to get off the exercise bike at the club in the middle of a class and lie down). This lasted for 2 days. Then I got tachycardia which lasted for 45 minutes (first ever for that long--a minute or two was the most prior to that); then I got extreme fatigue such that I couldn't move. Literally. I had to think and rest up before taking a walk to the bathroom. This lasted for 30 hours.
I suppose the extreme fatigue would be considered "flu-like". Other than that, the symptoms are consistent with a full body infection of some kind...affecting CNS and cardiac systems. It was bizarre, and I took myself straight to the doctor!
All he found was iron deficiency anemia...so I started on iron tablets. And continued to fall apart.
I believe MDL is one of the labs that is mentioned on the HHV-6 website as being a good lab for viral testing. Yes, just checked, it's mentioned as also using the IFA test...as does Focus and Specialty Labs. See:http://www.hhv-6foundation.org/testing.html Scroll down just a bit and you'll find it.
I would not buy the idea that if you treat something other than the viruses that you will get well (such as lyme or immune system or hypothalamus). The people in Dr. Montoya's open label study had been ill for quite some time, and many had tried lots of various remedies to no avail. It was the anti-viral that worked for them.
Now, having said that, it is a good idea to fix anything that is wrong (thyroid, bad diet, bad habits--smoking, poor sleep habits, high blood pressure, lyme disease, etc).
And it also should be known that valcyte doesn't work for everybody. But, I think there are reasons for that...and I also think it is worth a shot to try. Heck, I didn't want to keep feeling like I've felt for the last 4 years.
We don't have all the answers...all we can do is take our best guess.
If you have a high HHV-6 titer, I would try to get tested for all the viruses listed on the HHV-6 website in my post. I've been tested for pretty much all of them (a few have been left out).
Then you can try valcyte and see what titers improve. If some don't, then perhaps another antiviral drug will work against the viruses that haven't responded.
At least I think that will be my plan!
Best, Timaca
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I appreciate your response and recommendations. The test I had from MDL was seemingly very comprehensive as there was PCR and ELISA testing for many of the viral agents as well as some bacterium.
Chlamydia, HSV-1 and 2, EBV, CMV, HHV-6, HHV-8, Adenovirus, Coxsackie, and Mycoplasma were all tested for.
For me, at the time of this test, HHV-6 was all that came up and was IgG positive. The results, however, were not given in ratios as were the FOCUS lab results that you had.
If you have any additional thoughts/comments/questions on that, I'd be glad to hear them. Again, thanks for starting up this discussion. It has undoubtedly got me thinking as I'm sure it has others who are reading!
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timaca
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-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Many cases of chronic EBV disease display elevated EBV titers. However, it is difficult to diagnose serologically due to the variations of antibody responses possible. The Viral Capsid Antigen (VCA) IgG appears immediately after primary infection and persists indefinitely, falling gradually with time unless restimulated as in reactivated infection or chronic disease. The VCA-IgA is considered an acute phase antibody and its presence at elevated levels may be related to chronic or reactivated EBV infection. Titers to EA are generally detectable at onset of acute primary disease and begin to fall in 3-6 months. However, many cases of chronic EBV disease display elevated EA titers.
(My VCA IgG was 1:5120)
I found it interesting that the lab website was actually stating that certain IgG values could be suggestive of active infection....
Best, Timaca
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JRWagner
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up
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JRWagner
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Very important to all of us...we need to know our viral load.
JRWagner
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Timaca, any changes in your symptoms/titers?
Peace, Love and Wellness, JRW
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timaca
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Hi JRW~
I went through a bad spell that lasted about 3 weeks. First fractured sleep, followed by a very "red alert" body feeling (where my body felt very anxious--not my mind, my body), then severe nerve distortions (especially cold hands and feet). Plus extra fatigue.
Today is the first "good" day I've had in about 3 weeks. I sure hope it continues!!
AliG
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Hi Timaca
I'm finding this thread a little difficult to read because of the width generated by the long links.
If you could possibly place [url= before the link (with no spaces) and ] after, then a short name for the link, followed by [/url] , it will shrink the page for easier reading.
I hate to ask you to do extra work, but it would make it so much easier to read if you could.
Thanks! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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JRWagner
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Timaca...any progress? How about others that you know on Valcyte?
You will be pleased to know that a buddy of mine who has had Lyme for 14 years like myself, and who has gone to Dr. B (zilch) and many other LLMD's, just had the viral testing done at Focus Labs...and, well,wll, well...ALL his IgG titers were off the charts!
He goes to the same LLMD in NYC as I do and he is going to ask for a script for Valcyte.
ANYTHING with some sort of solid research behind it is worth a try at this point...
Since Dr. Montoya is a well respected research fellow at Stanford (couldn't ask for better credentials), and hhis "affiliation" with Stanford is real, trying this protocol might help many of us long timers.
Thanks again Timace for all of your info!
Peace, Love and Wellness, JRW
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timaca
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Ali~ I tried doing what you suggested, and it didn't work. Do you put the [url= before the http?? (I don't like the wide threads either, so if I can make them shorter I will!)
JR~ My friend (who is 2 months ahead of me on the valcyte) is better than I. Of course this does make some sense as she has had more valcyte. She is also on mino at the same time which may be making a difference too. She isn't well yet, just seeing slow steady improvement.
Tangerine who has been on valcyte for over a year just posted at this link: web page: HHV-6 forum (sorry for the wide post!)
I have thought about my backsliding that has been happening to me. I am still better than I was (typing is better, I can still walk faster on the treadmill than I used to) BUT a few things are worse...neurologically....headaches, nerve pain, brain pressures...
AND this is presenting in the same pattern as what happened to me after stopping IV rocephin. So, I'm inclined to think that there might be a bacterial pathogen that is rearing it's ugly head at the moment.
I plan on seeing my PCP on Monday and asking her to run the viral labs and lyme WBs again...to see if anything is coming back screaming high....to see if it is possible to identify what might be happening in me.
My friend who is also on valcyte thinks it is a flare in me. I'm concerned that it is more than a flare...something is growing unchecked.
Very interesting that your friend also has some high IgG titers. I do think that this is part of the answer for some of us.
Perhaps you and your friend could consider posting on the HHV-6 forum too.
There is some research going on that is showing tissue biopsies which have active infection to some viruses....and these are in patients with CFS. So, this is very exciting...actual proof that there is active infection going on. And they can look at their serum antibody IgG levels and compare those levels with the tissue biopsies...which will give us some idea of how high an IgG titer needs to be to have active infection.
Best, Timaca ps...I noticed a URL at the bottom of the page that I post at...maybe it will work to try this...
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AliG
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Yes, before the "http", then "]" after then a new name for the link (spacing in there is fine) then "[/url]
It should look like this:
code:
[url=http://ABCDEFGHIJKLMNOP] New Name of Link[/url]
I don't know if that helps, or maybe the following might be easier?
You can also copy the address from the link, then click on the "url" bar, just below the reply composition box (in the section "Instant UBB code" next to the "Instant Graemlins",
then Paste the address into the pop-up & "enter". It will then request a new name for the link & you can put in what you like.
Ali
[ 22. February 2008, 12:47 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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quote:Originally posted by timaca:
Tangerine who has been on valcyte for over a year just posted at this link: web page: HHV-6 forum (sorry for the wide post!)
I just noticed this, IT'S NOT A WIDE POST!!!!!
That means it did work!!!!
Unfortunately you would need to edit each of the other replies with wide links to shrink the page back down. Sorry.
Even if you don't go back & do that, at least you won't have the problem on any new threads.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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timaca
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Hi Ali~ Yes, the URL link at the bottom of the page did seem to work. I doubt I'll go back and fix the other posts, but perhaps with this post, we will switch to the next page...and from then on I'll try to post with links that are shorter and thus keep the pages less wide.
Thanks for bringing this to my attention. It annoyed me too, and I didn't know what the problem was or how to fix it!
Timaca
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JRWagner
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Thanks Timaca...
I do not know what Ali is referring to...I have had no problem with the URL's, etc.
Anyway...I am reading the post on the HHV-6 website...very interesting.
posted
Had major allergic reaction to the Valcyte...pulled me off of it pronto. I am not sure if he will try again. So, now I have this lovely bottle of $ 2409.91 Valcyte just looking at me
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timaca
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What was your reaction? No one in Dr. Montoya's first or second study had to stop valcyte....
So sorry you had a problem. Timaca
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1Bitten2XShy
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Feet swelled to look like the elephant man, hives everywhere, and I mean everywhere.
I have never had any reaction to meds, other than sulfa drugs.
He said we may try it again, I am not sure I want to.
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AliG
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I don't know if this might be of interest here, but it was some info I came across today that I thought might tie into the "viral" subject.
(I had noticed, in the prescribing info, that Valcyte is Rxd for HCMV.)
It would seem that a large percentage of the population would likely have this. Perhaps that is the percentage who can't fight Bb?
[ 27. February 2008, 05:50 PM: Message edited by: AliG ]
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JRWagner
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treepatrol
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timaca
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Hi JRW~
On Monday I saw my PCP and we discussed my recent backslide, including the "red alert" feeling that I had for about a week. She said that she has never had a patient describe that feeling to her, except me, and another patient of hers (who is my friend) who also has lyme and viral infections.
She ordered labs for LOTS of lyme and viral testings, to see if we could identify if any pathogen was "flaring".
So, this past week, I had my blood drawn and sent to 5 different labs...my local lab for CBC, CMP and UA...Igenex, Stonybrook and Focus for Lyme WBs; Focus for viral labs and LabCorp for Enterovirus panel.
I'm being tested for Enterovirus and Mycoplasma for the first time.
My hope is that everything will come back as being a non-issue, with the exception of perhaps a flare in the EBV. I don't wish to be infected with any other pathogen but the viruses I'm now dealing with.
Interestingly enough, I've had very swollen lymph nodes under my chin and in my neck...and painful to touch for the last 6 days. EBV can do that to someone....so can a cold. However, I have never had a neck feel like this before...and I also don't feel like I'm getting a cold.
Time will tell if it's a cold or not. (Although you think I'd be sick after 6 days of a swollen neck...)
Time will also yield some lab results.
I do feel like I'm slowly getting better (I almost hate to write that...since I don't want to go backwards again). We'll see.
How are you doing?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Well now, small world...I have a cold, and yes, my glands are swollen.
I was going to start Mino again but because of the cold, I will wait.
Interesting that you are getting three Lyme WB's...must be very costly?! However, it should prove interesting to see the results. Please let us know when you receive them...
EBV...I think this little bugger will prove to be a very important component of out collective misery.
Thanks again Timaca!
Peace, Love,and Wellness, JRW
[ 03. March 2008, 09:23 PM: Message edited by: JRWagner ]
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
JRW~ I knew you'd catch my "cold" if you read my post!! You should wash your hands more thoroughly after keyboarding!
Today was quite a good day for me...boy I can get a lot done when I have some energy...went to the athletic club and did some light weights and stretching, went to the grocery store, came home and swept and mopped the floors, and then proceeded to clean out the bedroom closet (which is the size of a very small room). I'm halfway done with the closet....
I haven't felt this good since my back slide started. Hopefully, this is a sign of good things to come.
This last month, due to the backslide, I've done maybe one of those things in a day, not all of them! Granted I still have nerve pain, muscle pain and other symptoms, but oh to have some energy again!!
Yes, I like to get several western blots, so I have a good picture of what is going on...
Why are you thinking of starting the mino?
Now, go wash your hands and eat some chicken soup. I made some yesterday, and as you can see, I am MUCH better today!
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Umcka works to help kill cold & flu viruses and a lot of other nasties (TB, yeast etc...). I wonder if it would help with other viruses. ???
It's certainly cheaper than Valcyte.
[ 03. March 2008, 01:25 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Tree! I don't know why that link was giving me such a problem.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Dirty little link
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Timaca...started the Mino again yesterday...did 100mg BID...am going to try only 100mgs/day to see if I feel any better...if so, I will stay at that dose. In the past I have gone up to 100Mgs., QID, so 100Mgs/day is no big deal. i did feel some of the usual lightheadedness that is not unusual in the beginning of a course of Mino, and my sinuses are clearing up a bit (could be coincidental with the resolution of my cold.
I tired of Amoxi...was taking 6 grams per day...did nothing...or so I thought.
Please keep us advised of your progress and that of your Valcyte buddies/buddettes.
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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JRWagner
Frequent Contributor (1K+ posts)
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posted
bump...
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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JRWagner
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I'm beginning to get some of the lab tests back that I had run recently.
The enterovirus panel (coxsackie B) all came back "high". (negative being <1:8) However the titers varied from 1:8 to 1:32...which I don't believe is significant. I think you need to be above 1:80 for it to be a concern. These were IgG titers...run at LabCorp
Likewise, while the Parvo IgG titer was elevated at 5.4....I don't think this is high enough to be considered an issue.
Of course, I'll know for sure when I see the doctor in May...but I think these "high" values are low enough to be a non issue.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
JR............is your friend V still trying Valcite? How's it going?
Posts: 661 | From NY | Registered: May 2003
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Hello Timaca and Warrior...my friend has not gotten the Valcyte as it is too expensive and his insurance will not pay for it...$2,400 per month!!!!
Timaca, why don't you think th high titers you have on your latest tests are significant?
Warrior...how are you doing?
Peace, Love, and Wellness, JRW
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