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Posted by timaca (Member # 6911) on :
 
Hi all~

Several people have private messaged me asking about viral testing. I decided to start a new thread on this topic, so that those interested in viral testing can have some idea of how to go about it.

My story briefly, diagnosed at Columbia University Medical Center by Dr. F as having ``probable lyme'' (didn't meet CDC criteria on my WB tests). He suggested IV rocephin due to the CNS involvement.

I improved significantly on rocephin, but didn't get well. An 11 month bout with C. diff also didn't help my situation.

Through a miraculous set of circumstances I met a man who had been treated by Dr. Montoya, and ID doctor at Stanford. He had been quite ill for 18 years and had been diagnosed with many things, including lyme disease. After 8 months on Valcyte (maybe 6 can't remember now), he got well. He now has his life back.

Our stories were very similar so he told me to get tested for viruses at Focus Diagnostics Lab, for this is the lab that Dr. Montoya uses and I could compare my results to what Dr. M considers high.

My first set of lab tests came back high for HHV-6 and not so high for EBV. 6 weeks later I was retested, and my HHV-6 was even higher and my EBV was very elevated. See the following for my test results:http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=1183486572

I ended up seeing Dr. M at Stanford, and he thought viral illnesses were part of my problem and suggested I take Valcyte, which I've been on for 6 weeks.

I recently dropped the minocycline that I was on, so that it could be assessed if the valcyte alone was working.

Now, I do think I had (and maybe still have) lyme disease. When the viruses became active would be anyone's guess as the symptoms are similar to lyme. I think the lyme suppressed my immune function allowing them to grow sometime after the rocephin was stopped.

For those interested in viral testing, here's what I've learned.

Read what you can at www.hhv-6foundation.org. Especially read the testing link and the patients forum. I'm Timaca there too. With regard to testing, read the elevated IgG section: http://www.hhv-6foundation.org/testing.html#elevate This will give you good information on Dr. M's theory behind high IgG levels and possible active infection.

Ask your local doctor or LLMD for viral testing using Focus Diagnostics Lab: http://www.focusdx.com/focus/0-home/index.asp You might call Focus first (see their website for a phone number) and ask if any doctor can use their lab. When I had my tests run it seems that a doctor had to ``sign up'' somehow in order to get the results. My LLMD was already signed up, so that was very helpful and he ordered the tests.

If you look at Dr. M's current research (he's now doing a placebo controlled double blind study) you can see the what tests he ordered on his patients, and what he considers ``high'' (what qualifies for entrance to his study) His current study can be found here: http://clinicaltrials.gov/ct/show/NCT00478465;jsessionid=1DA91E744A5B344BB6B8DA38B087554B?order=3

You can enter the labs listed in the study at the Focus website, and print out for your local lab what the drawing requirements are. Once you local lab has processed the blood, either they can ship it for you (they will likely charge for this) or you can ship it yourself.

Dr. M's first published study can be found in the Journal of Clinical Virology, Dec 2006 supplement. Here's the abstract: http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17276366&query_hl=4&itool=pubmed_DocSum

A bit more info can be found at www.hhv-6foundation.org....just scroll down the page a bit and you'll see info about the Stanford Study.

His first study had 9 out of 12 patients respond. He told me that actually 10 out of the 12 responded...he retreated one person after her thyroid issue (I think it was thyroid) was corrected and she responded the second time. What's he's found is that it is the people with the high titres that have gotten well, not the ones with the lower titres.

I discussed symptoms with Dr. M and he said that he has heard of every one of my symptoms...if not the exact symptom, then a variation of it. Even severe joint pain that hits a large joint for 3 days and then is gone can be caused by a virus. I do hope to discuss this topic a bit more with him and my LLMD in the future. For it would be nice if there was a way to distinguish between the two pathogens (bacteria and viruses).

For now, from what I know, the symptoms for lyme disease and viral illnesses are the same. I've had every part of my body affected except my nose....I've had headaches, brain fog, internal vibrations, ear ringing, joint pain (severe at times), muscle pain, nerve pain, cardiac issues, ``heart burn'', fatigue and feeling off balance. I've left a few out, I'm sure, but you get the idea.

Here's a link to the neurological symptoms of EBV: http://www.medhelp.org/forums/neuro/archive/3526.html

That's enough for now....I need a nap! Post back if you have questions.

Timaca

[ 03. February 2008, 08:44 PM: Message edited by: timaca ]
 

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Posted by SForsgren (Member # 7686) on :
 
So how are you doing on the Valcyte?
 

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Posted by timaca (Member # 6911) on :
 
Scott~ Go to www.hhv-6foundation.org. Click on the patients link. Click on Antiviral treatments. My story on valcyte can be found at "Timaca's and Deedee's Valcyte Journeys".

Timaca
 

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Posted by amkdiaries (Member # 7035) on :
 
Just read your post on the viral infections and I asked my LLMD today about it. He told me that in his practice he has not found treatment with Valcyte to be helpful.
I do believe that the symptoms of viral and bacterial infections are similar but what confuses me is why would someone initially going on antibiotics feel somewhat better if it was a viral infection. In my case I usually get better initially then plateau and then crash. If it was strictly viral I would think nothing would change about my symptoms by taking an antibiotic unless the immune system changes and gets suppressed from the antibiotics.
Then perhaps the viruses get stronger and you get sicker with time. Oh how I wish someone could figure this out!
 

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Posted by timaca (Member # 6911) on :
 
Hi amkdiaries~

Here are some thoughts: What were the criteria that your LLMD used in prescribing the valcyte? For example, did the person have a high IgG titre? Dr. M seems to be finding that only those with the higher HHV-6 IgG titres (1:320 or 1-640 and above) are responding to the Valcyte. Those with the lower titres (1:40 or 1:80) didn't respond.

It will be very interesting to see if the double blind placebo controlled study that Dr. M is currently researching proves his theory or not.

About feeling better on antibiotics...I can answer that from personal experience. I do believe I started with lyme disease. I had significant (read: land me in the ER) herxheimer reactions to antibiotics. I improved tremendously on antibiotics. I don't think I would have done that if I didn't have a bacterial infection. However, I also think that lyme disease messes with the immune system and depresses it. So, somewhere along the way that happened to me and these viruses (which we've all been exposed to) then began to grow. So, now I'm sick with that. I may still have lyme, that is hard to tell since there is no good test. If someone gave me a good dose of IV vanco I'd find out by whether or not I ended up in the ER again with a herxheimer!

Of course, this is all theoretical...but it makes sense...

Timaca

[ 27. September 2007, 02:39 PM: Message edited by: timaca ]
 

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Posted by CD57 (Member # 11749) on :
 
This is very interesting. Timaca, are you improving on the Valcyte?

I personally think it's likely that those of us with viral titers have both Lyme and viruses. I'd be interested to hear if the pts in Dr Montoya's study who had Lyme diagnoses have continued to improve/stayed improved post treatment (they wouldn't tell me that when I visited their clinic). And had they treated their Lyme or not?

My plan is to continue to treat Lyme and co-infections for awhile (I have no positive co-infections tests; we are treating clinically) and then try Valcyte if needed. Hopefully the viruses will go down....a number of folks have mentioned that this has happened to them when they addressed Lyme plus the co-infections.

Interesting that the viruses can cause the same symptoms as Lyme/co-infections.
 

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Posted by Geneal (Member # 10375) on :
 
I have been on valcyte for approximately 3 months with a brief break

Due to overload of systems during a herx.

I have extremely high CMV, HHV-6 and EBV titers.

My LLMD treats these infections as co-infections even though

They were triggered by Lyme or suppression of my immune system by Lyme.

Wish I could tell you I feel much better....but I have new problems

With tachycardia/low pressure, which are making me feel pretty bad right now.

My LLMD feels that 6-7 months should be an adequate time for treatment with valcyte

While I am of course addressing Lyme.

Hugs,

Geneal
 

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Posted by CD57 (Member # 11749) on :
 
Geneal -- wow! So you are treating Lyme with abx while on Valcyte? What abx are you doing?

GOOD FOR YOU!
 

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Posted by map1131 (Member # 2022) on :
 
IMHO, it's ALL a very large picture. Not just lyme, not just co-infections that are discussed freqently on this site but.......some very huge unknowns that are also keeping us from getting well. All virueses are not easy come easy go, when someones immune system is over run.

Our list of co's should include things like strep, staph, malaria, EBV, chlamydia (all types), mycoplasma, etc etc etc. Parasites should always be a great possibility in your list of co's. You don't have to live in the jungles of Africa to get these super bugs.

If that nasty bug/acarid could talk and give you it's life history prior to mixing it's stuff with you blood??????

I'm sorry I am ranting but I'm so upset today. Today I have got to have a strong discussion with my sister about her 23 yr old daughter illness they are calling colitis. I was with my sister last night when she received another phone call from my niece about another fever spike. My sister stating I don't know what is wrong with her? I can no longer keep my mouth closed. Weird things, many weird things have been going on for 4 + yrs after a deer tick attachment.

My sister chooses to believe lyme illerate docs.
I've hoped she would come to me and ask for guidance?????

Pam
 

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Posted by timaca (Member # 6911) on :
 
Hi CD57~ I think it is a bit too early to say if I'm improving on the Valcyte or not. I have just completed week 8 (out of the 6 months prescribed).

I can say that yesterday my body felt very "un-inflammed"...very much at peace...as one might feel after a good nights rest.

In the 4 years I've had this illness I have rarely felt like that. I ususally feel "inflammed" like an infected splinter in a hand feels.

Yesterday was nice...

Today I feel inflammed again, but I did a trip to Sam's club and actually enjoyed it (Sam's is like a Costco). I usually avoid going there for it takes too much effort, but today I went and it was fun.

I'd like to think that this is a trend, but it is way to early to tell.

A friend of mine who has finished 16 weeks of Valcyte is improving.

My WBC was 3.9 at the last draw, which is below the reference range. I will have another draw on Monday. Hopefully it has risen, or at least stayed the same.

I don't know how extensively Dr. Montoyas screens his patients for lyme. I intend to have another set of labs done at Focus Diagnostics for both viruses and lyme at the end of the month. That will be interesting....

Geneal~ Good luck treating all your viruses and co-infections and lyme!! Did you have a herx like reaction between weeks 2 and 4 of starting the valcyte??

map1131~ I agree that we end up being an infectious mess of various pathogens. It would be nice to identify them all, treat them, and get well!

Timaca
 

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Posted by Geneal (Member # 10375) on :
 
I am currently on doxy (again) for Lyme due to increase in symptoms lately.

I take 900mg of valcyte daily (450mg 2 x a day).

Kind of a scary drug. The potential side effects are frightening.

Like "known to cause cancer in lab animals".

However, it is an "old" drug and my neighbor's sister (both RN's) has been on it

For years for herpes (mouth variety) without any complaints or problems.

Initially, my LLMD felt that if we knocked the Lyme down, my immune system would

Jump up front and center and control this virus'.

So far the opposite has happened, thus the valcyte.

I may not be winning every battle, but I fully intend on winning the war.....one day.

Glad to see you post Timaca. I think I had a viral herx which really got ugly

When doxy was added back in (thus the break in valcyte).

Seem to be tolerating it better now, however am off Malarone again (was taking 6 a day too).

Hugs,

Geneal
 

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Posted by sunnymalibu (Member # 9586) on :
 
IV Rocephiin and Valcyte?

Does anyone know if these can be taken together?

I also have very high CMV, EBV and HHV-6 titers. I took Valcyte for months and my titers increased. I did see some improvements but then tapered off. I'm now on IV rocephin and would like to also take the Valcyte but don't know if that would be too hard on the body.

Does anyone take this combo or know if it's OK? Thanks!
 

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Posted by timaca (Member # 6911) on :
 
Hi sunnymalibu~ A pharmacist and your doctor would be the best to answer that question about combining IV rocephin and Valcyte.

I don't *think* I saw any contradictions as I was looking at such things on the various drug websites. But, I wasn't looking for that specifically.

You can go to Roche pharmaceuticals (.com I think)...or just google Roche and Valcyte and the drug info should come up.

www.epocrates.com is also a great drug website.

I think it's not unusual for the titres to go while on the drug. I think what happens is your body kills off the virus, your body's immune system recognizes it and more antibodies are made.

It will be interesting to see what my titres are when I have them drawn again.

Timaca
 

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Posted by sunnymalibu (Member # 9586) on :
 
timaca-thanks for your suggestions. I did some research and have not found any contraindications to taking Valcyte and IV rocephin together but will ask my doctor.
Have you checked out the CFS/FM message boards at immunesupport.com? There are many people There on valcyte and many patients of Dr. Montoya posting There about their experiences with Valcyte.

I agree with you that Lyme suppresses the immune system and allows the CMV, EBV, HHV-6 to flourish.

I have been sick for a very long time and write down all meds and supplements that I take everyday and the time taken. I very sporadically have GREAT days/and or hours where I feel back to normal. They are very sporadic. On those days I usually overdo my activities and then crash.

When looking back at what I took on those days, or the day before, it seems that I always took Valcyte or Valtrex, and either cipro, doxy, minocin and Phosphorylated Serine. It's very hard to pinpoint what combination made me feel so good because I don't know if it was I took the day before or the day of. I'm still trying to figure it out but I know that There is hope to feel 100% back to normal.

There is a lot written on immunesupport.com about high titers and titers getting higher after Valcyte because the med forces the viruses out of hiding. So it will be good if your titers are higher next testing.

If you do a valcyte search over There you will find a tremendous amount of info on valcyte, Dr. Montoya, testing, etc.

Please post your next results and let us know how your doing. Thanks!
 

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Posted by timaca (Member # 6911) on :
 
HI Sunnymalibu~ Yes, I'm aware of the immune support forum. I post there too (same name, Timaca). I also post at www.hhv-6foundation.org. I'm Timaca there too. Helps this lymebrain to keep the same name!

I was on IV rocephin and it helped tremendously. I had to stop due to a fungal infection in the picc line, and 3 weeks later my symptoms came back and hit me like a freight train.

I recently stopped mino, because Dr. M thought one medication at a time would be better.

I hope I don't get worse off it.

I get a blood draw tomorrow...that is mainly surveillance labs. Hopefully my WBC will be OK. It had dropped to below the reference range.

I plan on getting a blood draw for the viral titres and another WB at the end of the month.

Take care...post back if you go on the valcyte!

Timaca

[ 03. February 2008, 08:46 PM: Message edited by: timaca ]
 

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Posted by minimonkey (Member # 8693) on :
 
I requested an antiviral when my EBV titers were through the roof... and improved dramatically on Valtrex... (while on abx for Lyme, too)

Just my 2 cents
 

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Posted by timaca (Member # 6911) on :
 
That's great minimonkey! How long were you on the Valtrex?

Just a note for others reading this...Valtrex is not effective against HHV-6, just EBV. They often go hand in hand...so if you have high titres to one, you should get checked for the other.

An update on me: I'm 12 1/2 weeks into the valcyte. My WBC which had dropped below the reference range has now come above, and has even recently come out of the low 4s into the upper 5 range!

I am not feeling any better yet. However, it took my friend 15 weeks on valcyte to see improvements, so hopefully that will be the case for me too. I hope I am one who does respond to the drug.

My appt with the doctor at Stanford was changed from the end of Nov to Jan 11th. Oh well....another $100 to change the airline ticket!

I had some interesting conversations with 3 LLMDs at the lyme conference in Boston (one of the doctors was from Germany). They were all finding elevated levels of HHV-6, EBV and CMV in their lyme patients.

I do think that the lyme/viral correlation is important. And I believe there are some key doctors now interested in this correlation....and seeking to understand it better.

Timaca
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
Valcyte really does help a subset of Lymies, like everything- not everyone!!!

The CDC will test for TBE viruses- see W Nile thread for info if you want it-

If you are on anti-virals do NOT DRINK St JOHNS WORT TEAs!!!!!!!!!!!! It interferes dramatically with the efficacy of many anti-virals-

Best wishes,
Sarah
 

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Posted by JRWagner (Member # 3229) on :
 
up...must read for chronic Lymies...especially those with headaches, etc.!!!

Thanks again Timaca! I hope you, and everyone else have found an answer!

Peace, Love, and Wellness,
JRW
 

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Posted by timaca (Member # 6911) on :
 
JRW~ You are welcome for the info. I thought I'd give an update on how I'm doing.

I've completed 21 weeks of valcyte and have another month or so to complete 6 months on the drug.

I continue to improve, although it is a roller coaster at times.

Over the Christmas break I put ski boots on and decided to ski for half a day. (easy runs) A month before I could not have even tried walking in ski boots. Now I was trying to walk in them, carry my skis and ski! I did well until the last run where I really hit a wall. Whether I did too much or something else happened...not sure. I'm just glad that ski patrol didn't have to carry me off the mountain!

It took a few days to recover from the setback of skiing, but since then I've been feeling even more improved.

At most, prior to valcyte, I could walk on the treadmill at 2.5 mph. And that was on a good day. Now, 2.5 is very easy for me. Today I inched my way up to 3.1 mph. That's a first in a long, long time. (since the IV rocephin)

So, we'll see where all of this leads. I am encouraged to not feel like I have the flu 24/7...and to have more energy. I still have lots of symptoms, but Dr. M says it takes a year for those to go away.

I see the doctor at Stanford on Friday. I hope that appt goes well. If anything of note is said, I'll post it.

I do encourage all of you to get tested for viruses. Yes, this study of Dr. Montoya's is very new...and the results have yet to be released.

But I can speak for myself, my friend, and the person who encouraged us to get tested for viruses. We are seeing significant improvements on valcyte.

Best,
Timaca
 

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Posted by FuzzySlippers (Member # 13658) on :
 
I just want to say thank you to everyone on this thread for the information on the viral component. I've asked my LLMD to test me for possible co-infections (including viral co-infections) and gotten no where. I asked again for testing at my last visit the response I got was, "Well it's really not worth doing. You know what they say about viral infections. Once you have a virus, you'll always have a virus." It frustrated the living daylights outta me.

:-(
 

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Posted by timaca (Member # 6911) on :
 
fuzzyslippers~ Do lots of reading at the hhv-6 website. Print out articles, and take them to your local physician. That doctor may be willing to help you even if your LLMD won't.

Timaca
 

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Posted by tailz (Member # 10014) on :
 
I have high levels of parvo, HHV6, and EBV.
 

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Posted by timaca (Member # 6911) on :
 
tailz~ When you say you have high levels of Parvo, HHV-6 and EBV....how high is high? Are you getting treatment for this? (Specifically are you on valcyte?) If not, and your levels are high enough to warrant treatment, you might want to pursue this with your doctor.

Best,
Timaca
 

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Posted by skigal (Member # 7443) on :
 
Igenex testing states under LIMITATION: "Infection with HSV, EBV, HCV and/or syphillis may give false (+) results."
Could these viruses be another piece of the puzzle?
 

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Posted by timaca (Member # 6911) on :
 
skigal~ See the following article:
http://www.journals.uchicago.edu/doi/pdf/10.1086/498319?cookieSet=1

It states that false positive lyme tests can occur in people who are infected with VZV, CMV, EBV, and HSV.

What is interesting is that I had a CDC positive IgM WB that had many positive lyme specific bands. I also have high IgG antibody titers to VZV, CMV, EBV and HHV-6...which could be indicative of active infection.

After starting valcyte treatment, my WB tests showed the least number of positive bands ever!

Of course this is up for discussion as what it means, but people who have viral infections can give false positive lyme tests.

Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
up
 

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Posted by Bugg (Member # 8095) on :
 
I see an LLMD in Manhattan. I asked him last year whether he thought I should be tested for EBV and HHV-6. He said I should not because, in his experience, once you treat the lyme and co-infections, the high titers for EBV and HHV-6 will abate.

However, I've been reading all of these posts and some articles on viruses and I decided to ask him again about the role of viruses and lyme disease. He responded that over the past three months he's been doing more research about the role of viruses in the lyme community. He said he believes now it's worth testing for these viruses to see if, perhaps, an active/rampant viral infection is contributing to the chronic nature of the TBIs...

I'll be interested to hear about Timaca's appointment in January....

Thanks for all the info on viruses....
 

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Posted by timaca (Member # 6911) on :
 
Hi Bugg~ Glad your LLMD is willing to take another look at the viruses!

I don't think that bringing the lyme under control will necessarily rid the body of viral infections. The people in Dr. Montoya's studies don't have lyme, yet they still have viral issues.

And bringing my lyme under control hasn't helped my viral antibody titres one little bit.

I'm packing now for my trip, so likely won't have time to post again until the weekend.

Best, Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
My Lyme titers are low now...not before, and my symptomology is worse than ever. Is the answer viruses? Might very well be...

Fuzzy (great name) you need to be MORE FORCEFUL with your LLMD. TELL HIM...DO NOT ASK him that you want to be tested for the viruses! If he does not comply, tell him why you are leaving!

My Doctor, an LLMD in Manhattan, will test me for whatever I ask...why not? What harm could come from it? Knowledge?

Peace, Love and Happiness,
JRW
 

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Posted by timaca (Member # 6911) on :
 
JR~ You make some good points. When the gentleman who brought up the whole viral issue to me suggested I get tested for viruses, I said, why not? I've been tested for everything else.

Low and behold..they were high.

In talking with an LLMD a few days ago (not my own, just one who is very well respected and interested in my case)....we discussed whether lyme could have been in my past. Yes, possibly. Lab data was "soft" (not CDC positive). Symptoms and history, particularly severe herx reactions to antibiotics were more suspicious of lyme. Can it be proven I had lyme? No. Can it be proven I didn't have lyme? No. There isn't a good test for it.

By the way, this particular LLMD does NOT use IND bands from Igenex. He throws them out.

Discussing my more recent CDC positive IgM WB....those can be false positive...especially if a viral infection is present. Was mine a false positive? We don't know. This LLMD tends to look more at IgG WBs and C6 peptide test in people who have been ill awhile.

He and I are both comfortable right now treating only viruses, since I have fewer bands that are positive for lyme, and much higher viral titers.

We'll see what happens. Of course, this is all speculation...for it's all a guessing game...but we are taking the best educated guesses that we can.

Timaca
 

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Posted by timaca (Member # 6911) on :
 
I thought I'd post my most recent WBs...the ones that have very few bands, and which the LLMD that I consulted with feels is not worth pursuing treatment over...(some of you would disagree...but I'm giving you his opinion, not mine--although I agree with him)

Igenex (I'm not posting the IND, as this LLMD throws them out)--again, I don't think you'd argue with him--well respected
IgM 34+
IgG 41+

Stonybrook
IgM 45, 93
IgG 29

Focus Diagnostics
No positive bands on IgG or IgM

The above labs were run after 2 1/2 months of valcyte.

In January of last year I had a CDC positive WB from Igenex with the following bands positive
23-25
30
34
39
58
66
83-93

Was that a true positive or a false positive? No one can say for sure. Viral infections can cause false positive lyme tests.

What is significant is how few bands I'm positive for now lyme wise, and how high my viral titers are.

If you've been taking antibiotics for some time, and aren't getting well, please consider getting tested for viruses. I can't promise you that is your answer, but it is worth considering.

Timaca
ps...leaving now on my trip, I won't be able to respond to these posts until the weekend.

[ 12. January 2008, 03:38 PM: Message edited by: timaca ]
 

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Posted by JRWagner (Member # 3229) on :
 
up...important!
 

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Posted by Lemon2Lyme (Member # 13561) on :
 
Yes, the viral component in Lyme patients is very interesting. My EBV and HHV6 were also elevated.

I have not tried Valcyte but have been on Valtrex for a couple of weeks.

Since most people's immune systems repel these viruses with relative ease, it would seem the Lyme suppresses the body enough to allow for a kind of viral frenzy.

One would think that if the Lyme was somehow knocked out, then the immune system would step up and shut down the viruses again.

However, this is likely a lot more complicated than it sounds.
 

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Posted by treepatrol (Member # 4117) on :
 
Learning by Phages
 

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Posted by JRWagner (Member # 3229) on :
 
Tree...wow!
Timaca...thanks again. This just keeps on a gettin' complexer and complexer [sic]!

JRW
 

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Posted by ICEiam (Member # 7519) on :
 
The MD at the Fibro center here that works with our LLMD does IV therapy. Daugher was tested and had positive results for EBV and not real sure about the HHV-6. Have been looking for folder with test results all morning.....UGH

She is now giving her anti-viral in her weekly IV's and has her on some other anti-viral suppliments.

No progress yet........we will see. Hopefully this will help. I don't know that the IV's are the way to go......very costly.

Will let you all know after we give them a chance.

HUGS,
 

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Posted by timaca (Member # 6911) on :
 
Hi all~ I had a fabulous trip to CA and a great visit with the ID doctor at Stanford. What a kind, caring man he is!

First, to show one level of improvement....prior to the last month when I started feeling better there is no way I would have undertaken a trip like that myself...2 1/2 hours drive to the airport (one way), 2 hour flight, rental car, driving unfamiliar roads, etc. I got lost twice on the way to my hotel. Last month that would have been the straw that broke the camel's back, for it would have been hard enough to travel, let alone get lost along the way in an unfamiliar place...this time I just laughed and figured I would find my way (which I did).

The doctor was impressed that:
cognitively I've improved
I can do more activities of daily living (chores, errands, etc)
I lost my sick feeling at 15 weeks on valcyte
my labs have improved

I left my copy of the labs with him, so I won't be able to post the entire results until after Monday when I see my PCP (who also has a copy).

But, what I remember...my HHV-6 which had been
1:320 first draw
1:640 second and third draws
was now 1:160

My EBV had not dropped as much as he had hoped so far.

My VZV had been
1:256 (greater or equal too---as high as the lab measured)
was now 1:16

He wants me tested for further viruses:
HSV-1
HSV-2
He wished we had run them prior to starting the valcyte.

I'm 5 months into the valcyte now. He wants me on it for a total of 9 months. He'll see me again at that time.

We discussed how interesting it was that I had significant improvement on the rocephin...and that I had clockwork like, significant herx like reactions to antibiotics. He likes to entertain ideas...and one is that I had lyme in the past. Perhaps not now since my labs have so few lyme bands, and I'm improving on valcyte alone.

The results of his current double blind study will be released to the public in June. Published in December of 2008 or thereabouts.

I also shared that I had tried to ski over Christmas break (prior to Thanksgiving I was too ill to even think of putting on ski boots and walking in them). I skied easy runs for only 3 hours. I did fine until the last run where I literally had a meltdown...nausea, fatigue, feeling like I was going to pass out, and "hot flahses" followed by sweating. He thinks it is likely that I just maxed my body out...fighting the viruses, fighting the very cold weather, and trying to do more exercise than my body could tolerate. So, we agreed, that I won't try skiing again for awhile. :-)

Best wishes to all of you....check for viruses!
Timaca
 

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Posted by Bugg (Member # 8095) on :
 
Timaca--

It sounds like you had a great visit and are definitely making progress. That's wonderful!

Would you mind providing a list of all the viruses that Dr. Montoya recommends testing for (sounds like he's added a couple of new ones)???

Also, preliminarily, did Dr. Montoya give you any idea what type of results he's seeing with his study?

Does Dr. Montoya believe that lyme and co-infections can "activate" these viruses and that treating lyme and co-infections can possiblity reduce the virus titers?

Thanks so much, Timaca...
 

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Posted by oxygenbabe (Member # 5831) on :
 
I'm really glad you're feeling better and I find your case very confusing I must admit.
You felt better on rocephin but relapsed off it.
You feel better on valcyte and it may be the ticket for you.
So was the dormant lyme activated by viruses? And why so many active viruses?
I suppose it is possible that you got lyme, it suppressed your immune system, latent viruses all activated, while taking rocephin you kept the lyme in check so your immune system could then work on the viruses, and off the rocephin the lyme came back and the viruses activated again.

But somehow that seems like a bit of a stretch or reaching for an answer.

It sounds like viruses were the main problem all along and that makes me wonder what was going on, and why the rocephin helped so much.

I wonder if he has other cases like yours?
 

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Posted by timaca (Member # 6911) on :
 
I had typed a LONG response and then lost it all before posting it. SO, I will type a short response to Bugg, then write again later to Oxygenbabe. I can't believe I lost the post!

Bugg~ You can find a list of viruses to be tested for and how to go about testing for them at Focus labs if you look here:

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=1192829332

I will be updating this info to include the HSV 1 and 2 viruses. These viruses are all the ones I've been tested for, and may not necessarily be the ones you should be tested for. You can discuss that with your doctor. My approach was, "Let's test for everything we can think of."

Dr.Montoya thought of others he wanted me tested for.

His study is looking at HHV-6 and EBV only, although I imagine he is running lots of tests, including lots of viruses on all his participants.

He feels that his study is going well and the results will be made public in June.

Treating lyme won't necessarily make the viruses better or go away. The people in his first study didn't have lyme, yet still had viral issues.

Both lyme and some viruses (like HHV-6) mess up the immune system, causing other things to grow that wouldn't normally be a problem in healthy individuals. Hence one can end up like me, with several viruses being a problem.

I will post this now before I lose it again. Oxygenbabe, I'll answer yours soon, once I take a break and get over my lost post!

Timaca
 

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Posted by timaca (Member # 6911) on :
 
Oxygenbabe~ I find my case quite confusing too! If you didn't find it confusing also, I'd ask you to explain it to me!

As you may recall, I also improved on HBOT, and also relapsed. My improvement on the HBOT was not as great as the rocephin and the valcyte. Interestingly enough though, I improved quicker on the HBOT than on the others. I didn't stay on the HBOT as long as the others (10 weeks as compared to 6 months or longer).

Whatever I have seems to have a die-off from antibiotics, HBOT and antivirals.

In talking this all over with an LLMD, the thought is that it seems a bacterial infection of some kind was present due to my significant improvement on rocephin. The significant (and timely) herx reactions to antibiotics points to a possible lyme diagnosis. Labs were "soft" for a lyme diagnosis though.

I'm going to guess that a steroid shot activated latent lyme in me from a bite and rickettsia type rash (palms and soles) 8 years previous to the shot. I had 3 "flu like attacks"...one 3 weeks after the steroid shot, one 3 months later, and one a month after that. Was that lyme being activated first and then some viruses being activated with the subsequent 2 "flus"? Not sure. No can say when the viruses became activated as I wasn't tested for them until the summer of 2007. No one can say for sure I did or didn't have lyme.

I didn't get totally well on the rocephin...so perhaps the viruses were what I was feeling then.

However, the bicillin, even after all that rocephin, landed me in the ER with extended and recurrent tachycardia, then I got a circular rash on my abdomen and a flu like couple of days, then I got a stiff neck for 2 weeks (couldn't move it at all in any direction whatsoever) and a very sore elbow for 2 days.

This is a remarkable series of events, and points to a significant herx reaction to the bicillin, which would point to lyme. No one can say for sure however.

What the doctors are comfortable doing is treating only the viruses for now, as my viral titers are high and my lyme WBs aren't all that significant.

Of course, if I don't get totally well on the valcyte I will need to take a hard look at possible bactierial infection again.

You ask why so many viruses...well we've all been exposed to them. And when the immune system is compromised (via lyme or HHV-6) then other viruses can come into play.

Hence, party in my body!

An objective measure that shows I'm doing better is how fast I can walk on the treadmill. Since I was a serious athlete prior to getting ill, I have still dragged myself to the athletic club even if it was to walk at a snail's pace on the treadmill for 10 minutes.

Prior to Thanksgiving, my max speed on the treadmill was 2.5 mph. Today I maxed out at 3.2 mph. I don't stay long at that top speed, as I don't want to overdo it, but it is impressive to me that I can easily walk over 2.5 mph, when it was impossible before.

I do know that Dr. M has one other patient similar to me as she is my friend and lives in the same town as I. She did have high titers to Q fever. He has allowed her to stay on minocyline while on the valcyte. She is improving too.

Best,
Timaca
 

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Posted by kam (Member # 3410) on :
 
Timaca,

Just read part of your posts but I am so glad you are seeing improvement. yahoo!

I am too weak right now to take the next step or even know what the next step is towards looking into this.

What is your next step?
 

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Posted by oxygenbabe (Member # 5831) on :
 
This is VERY interesting.
I am going to propose an occam's razor novel hypothesis, inspired by the recent postings on mycoplasma bioweapons.

I am going to propose a modified mycoplasma (bioweaponized) bug that functions almost as a virus and almost as a bacterium, and thus is inhibited by antibacterials (but not sufficiently killed) and inhibited or perhaps killed by valcyte. I'm proposing that, by different mechanisms, various abx inhibit the mycoplasma, and perhaps the valcyte irreparably damages it. Because it is a hybrid species anyway esp if bioweaponized it has elements of both.

I'll propose that this mycoplasma allows dormant borrelia and viruses to activate.

That's my occam's razor proposal for the day.

I remember hbot helped you but not ALL that much just somewhat.

KEEP us posted I hope you maintain remission.

I don't know how fast 3.2 mph is. (IE can't picture it)
 

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Posted by JRWagner (Member # 3229) on :
 
Hmmmmmmmmmmmmmmmmmmm UP!
 

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Posted by timaca (Member # 6911) on :
 
Kam~ Try to get yourself to your local PCP and ask for viral testing. Print out the info at the HHV-6 website...both from the testing link, and what I posted in the patient's link about getting tested for viruses at Focus lab. Perhaps Ann can help you. You've been so sick for so long...you should check this out for sure.

My next step is to stay on the valcyte and get tested for HSV1 and 2.

Oxygenbabe~ Please note, I am far from being in remission. I am making progress in the right direction however.

JR~ Hmmmmm is your only comment????

Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
No, Hmmmmmm is not my only comment.

THANKS AGAIN...see? I have another.

That said (very profound, no?) I am going to get tested as well. This headache and neck pain reminds me of when I had mono...in HIGH SCHOOL!

The same hangover times 10 feeling. Nothing else has worked...so we must do our own research and experimentation...the ole' "Trial and Error" approach, unfortunately.

Funny, there was a "Vibrational Therapy" practicioner in Westchester Co., North of NYC, that, in 1995 told another Lyme friend of mine that there was a virus "piggybacking" on the Lyme bacteria.

She just might have been on the money. Would have saved me with all the damn ABX I had taken for the past 13 (I had Lyme for 14) years!

I simply did not believe in the therapy...perhaps I was WRONG...balme the Lyme of course.

Peace, Love and Wellness,
JRW
 

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Posted by Bugg (Member # 8095) on :
 
Timaca--

Thanks so much for taking the time to provide a thorough account of your viral testing. I tried to find in your previous post if you talked about co-infections. How did you determine that you didn't have babesia, bartonella, or ehrlichia? In other words, what did Dr. F (I think it was that you went to originally) see in your case that made him determine you don't have those co-infections?

Thanks so much....
 

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Posted by timaca (Member # 6911) on :
 
JR~ Thanks for the chuckle...I always thought you were a man of more than "Hmmmmmm".

Bugg~ I never tested positive for any co-infections. We tested several times at several labs. Now, some would say that a negative test doesn't necessarily mean you don't have it, and that could be true.

The conclusion that I came up with recently with an LLMD (and Dr. M for that matter) is that my body is making few antibodies to the lyme bacteria, and making lots of antibodies to viruses. Hence, treat the viruses. If I don't get well, we will revisit the bacteria issue.

Also, please note, that if your body is making antibodies to the lyme bacteria on the IgM WB...and you've been sick for some time, that viral infections can cause false positive lyme test results. So keep that in mind.

I hope to post my viral test results on the HHV-6 forum later today. I saw my PCP and she too is impressed that I'm walking faster on the treadmill, and that my viral titers are decreasing for HHV-6 and VZV.

I had blood taken from me today to go to Focus for HSV1 and HSV2. I told the lab, "This blood is to go to Focus. It is not to stop anywhere but Focus. I know your lab can process it, I don't want you to process it. Send it to Focus (please)" We'll see if it makes it to Focus!


Best, Timaca
 

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Posted by heiwalove (Member # 6467) on :
 
timaca-

thanks for keeping us updated. this is very interesting to me, and i must admit, very confusing.

can you please explain how viruses could possibly elicit a false positive lyme antibody response? i have never heard of such a thing, but am open to whatever explanation you're willing to offer.

thanks.
 

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Posted by timaca (Member # 6911) on :
 
Heiwalove~

Read the following article:

http://www.journals.uchicago.edu/doi/pdf/10.1086/498319?cookieSet=1

Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
Hmmmmmmm Timaca...the only problem with the False Positive Lyme tests is that the paper mentions RECENT infections with viruses are responsible...not past infections. Now, this does not address past Viral infections so they might be responsible for false positives as well.

Who knows? Shadow knows....

Peace, love and Wellness,
JRW
 

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Posted by timaca (Member # 6911) on :
 
JR~

Hmmmmmm Yes, the paper does deal with acute viral infections. Since CHRONIC viral infections are just now being recognized as existing, then further light will be shed on the subject as people who are ill are tested for both viruses and lyme.

The LLMD that I recently spoke with (not my LLMD another who is interested in my case and definitely unbiased) said that it is possible that my CDC positive IgM WB in Jan. 2007 could have been a false positive. Especially since it is likely that I had viral infections going on at the time (chronic infections). However, there is no way to tell for sure if it was a false or true positive. (Hence the need for a good lyme test)

He looks more at IgG and C6 peptides than IgMs in people who are chronically ill with lyme.

I think this area of science is altogether too new, since most doctors haven't recognized chronic viral infections.

Case in point. I was at Cleveland Clinic, speaking with an ID doctor there who specializes in acute viral infections in transplanted heart and lung patients. I asked if there was someone there who could evaluate me for chronic viral infections. She said "no." She later learned that the ID doctor at Stanford (who she knows) believes I do have chronic viral infections and suggested valcyte.

We'll see if I get well. I am feeling better and my viral antibody titers are decreasing, so hopefully I am headed in the right direction.

Timaca

[ 03. February 2008, 08:53 PM: Message edited by: timaca ]
 

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Posted by JRWagner (Member # 3229) on :
 
Timaca...glad you are feeling better! Isn't it AMAZING that there are not more Drs. who treatchronic viral infections. The Drs. simply drop the ball and assume that the virus is gone or under control...or dormant.

Sometimes I feel that Doctors are the enemy, not the solution. I am SOOOO glad you found some good ones!

Peace, Love, and Wellness,
JRW
 

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Posted by JRWagner (Member # 3229) on :
 
up...important!
 

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Posted by CherylSue (Member # 13077) on :
 
I am following this discussion with avid interest. I am so glad to hear Timaca is improving. It's so encouraging.

I was negative for Lyme on the IgM western blot, but positive on the IgG. Does this make a difference when it comes to false postivies? Is it more likely I have Lyme ( been sick off/on for 7 1/2 years) because I have a positve IgG?

Thanks,
CherylSue
 

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Posted by timaca (Member # 6911) on :
 
CherylSue~ The LLMD that I was speaking with looks at the IgG WB more so than the IgM in people who have been ill for some time. He also looks at the C6 peptide test.

I would not ignore a positive IgG WB for lyme, but seek someone to treat you.

I would also suggest getting a C6 peptide test and get tested for viruses.

It is possible to have both lyme and viruses.

Best,
Timaca
ps..I walked on the treadmill at 3.3 mph today (5 minutes at this speed )--total mileage 2. First in a LONG time for that!
 

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Posted by lymebytes (Member # 11830) on :
 
Timaca, Glad you started this post. I have both LD an viruses - with co-infections and viral issues 8 diseases in all. All set off by cortisone injections. All were on the U.S. rare disorder list! Ducks do not acknowledge reactivated viruses anymore than they do Lyme disease.

You actually brought up another thing, when you brought up your friend, people should consider being tested for Q-fever. The IDSA may not recognize chronic lyme, but they do recognize chronic Q fever, which can be another tick borne disease - go figure.

According to this site it reads: "Blood-sucking ticks spread the Q fever microbe to wild animals, but seldom to humans." If ticks spread it, then it is possible anyone of us could also have it, another test we really should be tested for. There are many sites, but this is the one that contains the quote above.
http://www.ccohs.ca/oshanswers/diseases/qfever.html and http://www.nlm.nih.gov/medlineplus/ency/article/001337.htm

I have been on Valtrex over a year, it helped all my positive viral IgM titers go back to normal even HHV6, but the IgG's remain high, so on to Valcyte. My LLMD recommended it a year ago and I didn't want to change. Now I know Valtrex has gone as it is going to go with me.

Such an informative thread, it has taught us:
A). Never have cortisone shots or any other vaccination when infected w/LD - it does reactivate dormant viruses and disseminates LD an is very detrimental
B). Get tested for viruses (especially if you have death herxing and aren't getting better)
C). Maybe Q fever needs to be looked at as well.

Take care.
 

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Posted by timaca (Member # 6911) on :
 
MomfromTexas~ Because the improvement on rocephin was quite significant, the LLMDs and I think it was due more to actual die-off of a pathogen.

Prior to getting ill I was a serious athlete that did races over 13,000 ft mountain passes, and backpacked 7 days over rigourous terrain, and was involved in community, church and school activities, often taking a leadership role.

I then became too sick to type more than a few sentences, wasn't able to read more than a sentence or two (due to severe brain fog), wasn't able to follow conversations, had to sit on a stool to cook dinner due to fatigue, and had lots of nerve pain, joint pain, muscle pain, cardiac issues etc....

After rocephin I had much more energy (3.2 mph on treadmill), no brainfog (could read, type and follow conversations), and significantly less symptoms.

3 weeks after the rocephin was discontinued, BAM! I was hit again with fractured sleep, increased nerve, joint and muscle pain, internal vibrations and ear ringing. This hit me very suddenly..it didn't come on gradually.

I got quite ill again...although my brain fog never got as bad as it did at it's worst.

I was put on bicillin next and it landed me in the ER with a herx reaction (extended tachycardia, followed by flu like day with a circular rash on my abdomen, followed by a stiff neck that lasted 2 weeks, and a very sore left elbow that lasted for 2 days)...I never saw improvement from that antibiotic.

I have improved thus far on the valcyte as much as I did on the rocephin. The doctor prescribing the valcyte believes it is because of die-off of the viruses. I would have to think that because I improved equally on the rocephin, it would also have to be due to die-off of bacteria.

However, no one know for sure in either case.

We only hope I will get well at some point in time.

Lymebytes~ I second the "never have a cortisone shot". It was a steriod shot to my knee that started this whole illness in me in the first place.

Thanks for summarizing the lessons learned thus far from this thread.

You must be a teacher or a preacher by trade!

Timaca
 

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Posted by oxygenbabe (Member # 5831) on :
 
Timaca, you are the most interesting and confusing case. Obviously that was a herx reaction to bicillin but without benefit. Obviously the rocephin helped but only while on it. So if thats the case then you're likely still to have the bacteria...and yet, the valcyte is helping as much as the rocephin.

Well I just hope you stay well off the valcyte.
 

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Posted by lymeparfait (Member # 14268) on :
 
There seems to be an order of treatment...based on each person's individual diagnosis, especially related to viruses.

Also...just found out there is a gene that is resistant to treatment...does anyone have this?

Would like to compare info for treatments.


I have recently been tested for LYme and viruses, and just started treatment.

Igenex.

Have very high viruses,
POsitive WB,
Lyme
Ehrlishiosis,

EBV
Parvo B19

Lupus
Herpes,

I also have the gene that is resistant to lyme treatment..,

Dr. says that my treatment may be a battle and longer than most to see recovery due to this gene.

LLMD is treating me one layer at a time in a specific order due to positive responses from patients with simular series of bacteria/virus combos.

1. treatment... Doxy for Ehrlichiosis...LLMD says after Ehrlichisis is treated..will retest, and many results will change. Will evaluate new treatment then.

For the EBV......"Laurasine" supplement. (a combo of calcium, monolaurin, and lysine)

Also added supplements for my mineral and vitamin difiencies that help during this initial treatment. Mulitvitamin, B-12 shots, D-3, potassium chloride, Iron

and at night, Fish oil, and Acidophylus.

After 6 weeks...I feel dramatically better

mentally, not such severe fatigue...gotten much

energy back, at least enough to function.
(although a long way to go)

Believe the viruses were and are the major

fatigue problem...the B-12 shot helped me after

the first 20 minutes...amazingly! After the firswt week, my body temp began to rise to normal temp., and my digestive problems noticeably lessoned, and joint problems eased. I did have some herx in between..fevers and more severe pains...but I also did detox and baths which relieved it over time..

I believe the combo prescribed based on full virus/bacteria/and metabolic testing is beginning my healing.

I believe as well as other posters that the

viruses have come from underlying lyme. Also

believe my lupus diagnosis is lyme induced

lupus. My LLMD says many (not all)of patients

have tested completely negetive to Lupus after

co-infection/and lyme treatment.

It gives me hope anyway.


Also just had Brain Specht Scan at columbia with MRI

LLMD wants to see those results first before

beginning any new protocol. thinks because of

Neuro symptoms...this may be where to focus

next , again in an orderly/layered fashion.

Lparfait
 

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Posted by lymie tony z (Member # 5130) on :
 
just my two cents for what it's worth....

I don't believe there are "false Positive" results for Bb. There may in some way be false negatives but never a false positive.

I suppose it is possible that some of the bacillous may in some way react with the reagents the labs use for detection of Bb.

I also had a Oomprehensive massive bunch of blood tests and come up positive for Bb and no coinfections but a lot of viral infections.

I remember, somewhere I read one of you seemed not to realize that Babesia(a co infection of TBD's) is a parasite. There are only three known

or identified parasites or species of Babesiosis that we know about. So yes we could have some parasite/s in our systems.

I often wondered if the viral positives were just cross referenced when testing for lyme disease.


I also read somewhere that Bb can often act out of character and seemingly act as a virus or fungi.

It is the great imitator. WHich might explain some who don't get better treating virus's.


Those that do improve with anti-virals I will reserve my thoughts on.

Anti-fungals would have to be a consideration some time in treatment after or before and then after,again, abx treatments either IV or IM.

I also read up here in this thread that someone allowed some duck to give them steroids!

This should be avoided IMHO at all costs, and THIS was the reason you relapsed and had flulike symptoms.

Immunosuppressants will always give me flu-like symptoms like a herx and pain&fatigue.

One might misconstrue this to be a herxiemer reaction...when indeed it is not...

it is more correctly explained as further aided dissemination of the Bb bacteria, as exampled by your stiff neck and other symptoms...neuroencephalitis...

I am curious. a friend of mine was given a anti-viral for Parkensons symptoms. She left here LLMD's care however before I found out about any significant improvements.

Just my two cents...

zman
P.S. if Bb has the ability to mutate into several forms. Might it not be able to mutate and or pick up a piece of the dna of the dormant

virus and reactivate/or turn the dormant virus into some kind of "retro-virus of a new species, just to hide? However mutating with enough of

the virus dna in it to still be susceptable to the anti-viral medications? Bb instead of just being accused of suppressing our immune systems,

may just be using it's ability at deception for preservation and keeping our immune systems confused or otherwise busy. I would think all

the drugs we all do,the worry,stress of futility and pain would be lowering our immune


systems all by themselves. I just don't think Bb can compromise our immune system or make it biologically deficient...

It might only seem deficient because it's being made a fool of by a very clever, mutating,

imitating,"posibly engineered", bacteria of the spirochetal family or species.


zman again....
 

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Posted by timaca (Member # 6911) on :
 
Hi oxygenbabe~ Yes, it is confusing. Obviously, I had a herx to the bicillin. (rocephin too and IV vanco as well...those were before the bicillin).

I don't think the bicillin was without obvious benefit, as I did have a huge herx, so some die-off was occuring.

Yes, I still had significant symptoms while on the bicillin, but since viral infections and lyme infections give the same symptoms, it very well could be that the bicillin killed off the remaining lyme and I only have viruses left to deal with.

I can only hope that is the case, since I'm only on an antiviral now!

I, too, hope I stay well off the valcyte.

A small milestone occurred yesterday. I went to an evening class put on by our local hospital on sports injuries. There is no way I would have done something "extra" like that a couple of months ago.

Timaca
 

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Posted by timaca (Member # 6911) on :
 
I keep losing my posts, so I'll be posting short, sweet posts from now on.

MomfromTexas~ If your son has relapsed, I would run all the tests for lyme, coinfections and viruses that you can think of. Check out www.hhv-6foundation.org for testing info. There is a link there for testing, and also the patients link has a testing section. I posted there how to go about getting tested at Focus labs.

Lymeparfait~ Good luck to you! You have a lot to deal with!

Timaca
 

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Posted by timaca (Member # 6911) on :
 
zman~ There can be false positives for Bb. Read the above posted article. That article also contains references to other articles showing the same thing.

If you came up positive for a lot of viral infections, I hope you are treating those.

Bb can "act" like a virus in that once infected with either a bacteria or a virus, you CANNOT tell the difference between the two by symptoms alone.

I described every single symptom of mine to the ID doctor at Stanford, some which I thought were very specific to lyme (like severe joint pain that moves from joint to joint). I asked if a virus could do that. He said: "YES."

I covered the same question with a well respected LLMD who is unbiased towards my case. There is no way to tell the difference between lyme disease and a viral infection by symptoms.

Thus, lab tests are needed.

Yes, I was the person that allowed a doctor to give me a steroid shot. This was when I was perfectly healthy. THEN I began to fall apart. And I fell apart for the reason you stated...the shot suppressed my immune function, allowing the latent bacteria to grow and become disseminated.

I would LOVE for orthopedic doctors to know about steroids/lyme. Most don't.

The friend that suggested I get tested for viruses was eventually diagnosed with Parkinson's. He didn't have Parkinson's and he did get well on anti-virals. He has recently talked with a Parkinson's group of some kind...sharing his story. I don't know the outcome.

Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
up
 

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Posted by JRWagner (Member # 3229) on :
 
Timaca...any new results from your blood tests of January 14th?

Hope you are better!

Peace, love, and wellness,
JRW
 

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Posted by timaca (Member # 6911) on :
 
JRW~ I called Focus labs today to make sure that my blood arrived there. They got it on Wednesday. I imagine I will have the results sometime next week.

Timaca
 

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Posted by timaca (Member # 6911) on :
 
bumping this thread up for Scott's question on viruses.

Timaca
 

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Posted by timaca (Member # 6911) on :
 
Got my lab tests back for HSV 1 and HSV 2 IgG. (Note the doctor did not order IgM--since I've been sick for some time, he was only interested in IgG)

HSV 1 was as high as the lab measured on both ELISA and Immunoblot.

HSV 2 was negative.

Timaca
 

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Posted by oxygenbabe (Member # 5831) on :
 
So is that good or bad?
 

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Posted by timaca (Member # 6911) on :
 
I haven't talked with the doctor yet as to what it means. And unless he calls me, I won't know his thoughts until I see him in May.

But, my guess is that it shows I have infection of HSV1 virus. It would be interesting to know what the IgG antibody titers are of those who are healthy but get "cold sores". Are their titers as high as mine?

What is also interesting is that I've been on valcyte for 5 months...I think valcyte is effective against HSV1, but not sure.

I've made no antibodies to HSV2, so I have no infection of that virus.

Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
Things keep getting curiouser and curiouser....

Feel better Timaca I would be interested (I am sure you would also) in what the Dr. would say now.

Thanks for keeping us up to date.


Peace, Love and Wellness,
JRW
 

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Posted by jocus20 (Member # 11576) on :
 
Im still confused as to how valcyte and other antivirals work.

Do they just try and boost the immune systems response to them?

Anyways im really going to look into this and ask my Dr to try valcyte. My hhv-6 was slightly high and EBV was rediculously high. The Igg was 4.2 and the range was from 1.2 to 1.6.

I think that probably warrants some sort of treatment.
Hopefully it helps.

Joe
 

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Posted by Anneke (Member # 7939) on :
 
Timaca,

i just wanted to THANK YOU for being so transparent in your battle with your illness!! It is SO HELPFUL for all of us to read about your story and your past and current treatment. Many don't feel the need or have the desire to share what might be so helpful for others to hear. So, I want to thank you SO MUCH for your courage and compassion to do so!

The sharing of your experience may lead to the wellness of countless people who have been reading but not posting.

I WISH YOU ALL THE VERY, VERY BEST and will celebrate each of your victories!

Anneke
 

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Posted by timaca (Member # 6911) on :
 
Joe~ I think the antivirals work by actually killing of the viruses. With valcyte you can expect a herx like reaction as well.

Please read the following link, and get tested at Focus labs, then compare your results to what Dr. Montoya considers high.

If you are high only for EBV then Valtrex is the drug of choice. Valcyte is needed only if HHV-6 is involved.

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=1192829332

Anneke~ Thank you for your kind words. I do hope that my postings here and on the HHV-6 website will be of benefit to others.

Best, Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
up....
 

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Posted by jocus20 (Member # 11576) on :
 
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?

Id like to find out before i ask for it.

Thanks.

Joe
 

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Posted by SForsgren (Member # 7686) on :
 
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.
 

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Posted by timaca (Member # 6911) on :
 
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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Posted by jocus20 (Member # 11576) on :
 
Why do you have to get tested at focus?

If i have high titers from quest shouldnt that be enough to warrant antiviral treatment.

I really dont have the money to spend on testing unless its absolutely neccesary.

My EBV was very high and hhv-6 was slightly high.

I guess if EBV is my main issue than i should try valtrex?

What do u guys think?

JOe
 

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Posted by timaca (Member # 6911) on :
 
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)

Read: http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=1192829332

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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Posted by JRWagner (Member # 3229) on :
 
up...important!!!
 

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Posted by Truthfinder (Member # 8512) on :
 
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?
 

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Posted by timaca (Member # 6911) on :
 
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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Posted by Truthfinder (Member # 8512) on :
 
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.
 

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Posted by JRWagner (Member # 3229) on :
 
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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Posted by timaca (Member # 6911) on :
 
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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Posted by JRWagner (Member # 3229) on :
 
up again...important stuff!

[ 29. January 2008, 11:12 AM: Message edited by: JRWagner ]
 

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Posted by JRWagner (Member # 3229) on :
 
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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Posted by timaca (Member # 6911) on :
 
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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Posted by JRWagner (Member # 3229) on :
 
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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Posted by timaca (Member # 6911) on :
 
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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Posted by 1Bitten2XShy (Member # 12280) on :
 
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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Posted by timaca (Member # 6911) on :
 
OneBitten2xShy~

Welcome to the valcyte bandwagon. Glad to have you on board!

I hope you will encourage your doctor to read www.hhv-6foundation.org.

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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Posted by 1Bitten2XShy (Member # 12280) on :
 
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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Posted by jocus20 (Member # 11576) on :
 
Anyone heard of people using FAMVIL for EBV?

My dr prescibed this for me.
 

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Posted by AliG (Member # 9734) on :
 
I remember Stymie talking about a good antiviral a while back. I don't recall which one.
 

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Posted by JRWagner (Member # 3229) on :
 
Hmmmmmmm...great info. UP!!!!

JRW
 

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Posted by JRWagner (Member # 3229) on :
 
Keeping this up...important!

JRW
 

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Posted by SForsgren (Member # 7686) on :
 
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
 

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Posted by timaca (Member # 6911) on :
 
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.

See: http://www.hhv-6foundation.org/testing.html#elevate

The doctor at Stanford never recommended that I be tested in the way which you described.

Best,
Timaca
 

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Posted by 1Bitten2XShy (Member # 12280) on :
 


Just picked up my 1st 30 day supply of Valcyte, and almost passed out..not from the Lyme either!

30 days is $ 2409.91. HOLY COW
 

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Posted by timaca (Member # 6911) on :
 
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.

Here's the entire link:
http://www.focusdx.com/focus/1-reference_laboratory/search_frame.asp?searchOptionScope=2&S1=1&S2=1&test=&sp=41020&Keyword=41015#an_41020

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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Posted by 1Bitten2XShy (Member # 12280) on :
 
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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Posted by HamDune (Member # 14139) on :
 
Hi timaca,

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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Posted by timaca (Member # 6911) on :
 
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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Posted by HamDune (Member # 14139) on :
 
Hi, Timaca-

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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Posted by timaca (Member # 6911) on :
 
Sounds like getting tested for HHV-6 at Focus labs would be in order. I would also add in EBV at Focus. Consider code number 40530 and 40445 at the focus website:
http://www.focusdx.com/focus/1-reference_laboratory/index.asp

see the following for how to get tested at Focus:

http://hhv6foundation.proboards101.com/index.cgi?board=testing&action=display&thread=1192829332

Then you can compare your results to what Dr. Montoya considers high.

Best,
Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
Up...too important to get lost!

JRW
 

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Posted by 1Bitten2XShy (Member # 12280) on :
 
Starting the Valcyte today. Will post on how I am feeling as well as my HHV-6 levels as time goes on.
 

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Posted by timaca (Member # 6911) on :
 
1Bitten2Xshy~

Good luck with the valcyte. Make sure to take it with food for best absorption (perhaps even some fat according to the Roche website).

Timaca
 

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Posted by treepatrol (Member # 4117) on :
 
I thought I would put in there sites Pdfs for inquiring minds.

Complete Product Information


Important Patient Information

There Both PDF's
 

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Posted by 1Bitten2XShy (Member # 12280) on :
 
Tree-

Thanks for posting.

I was nervous enough about it, now.....

Seriously though...thank you
 

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Posted by timaca (Member # 6911) on :
 
Here is some interesting info from the Focus website about viral IgG titers:
VZV IgG:
http://www.focusdx.com/focus/1-reference_laboratory/search_frame.asp?searchOptionScope=2&S1=1&S2=1&test=&sp=41020&Keyword=41015#an_41020
Single titers >=1:256 are considered suggestive of recent or active infection.

(My titer was >=1:256)

And EBV:
http://www.focusdx.com/focus/1-reference_laboratory/search_frame.asp?searchOptionScope=2&S1=1&S2=1&test=&sp=40445&Keyword=40445#an_40445
This panel detects antibody responses to EBV which may suggest chronic infection. Specimens with titers above the reference ranges (see below) are suggestive of chronic or reactivated EBV infection. Titers within the reference ranges are due to past infection.
Reference Range
VCA IgG-IFA: 1:10-1:2560
VCA IgA-IFA: 1:10-1:80
EA (R + D) IgG-IFA: 1:10-1:320


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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Posted by JRWagner (Member # 3229) on :
 
up
 

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Posted by JRWagner (Member # 3229) on :
 
Very important to all of us...we need to know our viral load.

JRW
 

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Posted by JRWagner (Member # 3229) on :
 
Timaca, any changes in your symptoms/titers?

Peace, Love and Wellness,
JRW
 

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Posted by timaca (Member # 6911) on :
 
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!!

Here's a more detailed account of my "flare" (or whatever it was)....
http://hhv6foundation.proboards101.com/index.cgi?board=cfs&action=display&thread=1202845249

Also, someone else who is on valcyte (deedee's post):
http://hhv6foundation.proboards101.com/index.cgi?board=antiviral&action=display&thread=1186776393&page=6

No new labs drawn...

Best, Timaca

[ 22. February 2008, 09:00 AM: Message edited by: timaca ]
 

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Posted by JRWagner (Member # 3229) on :
 
Thanks Timaca...I too get very cold feet and hands.

I often feel like an electrical current is going through my shoulders/arms/hands/head.

I do hope your good feelings continue and that you might have found your answer to this damn disease!

Peace, Love and Wellness,
JRW
 

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Posted by JRWagner (Member # 3229) on :
 
Up to answer question re. EBV treatment...

JRW
 

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Posted by AliG (Member # 9734) on :
 
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
 

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Posted by JRWagner (Member # 3229) on :
 
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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Posted by timaca (Member # 6911) on :
 
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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Posted by AliG (Member # 9734) on :
 
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 ]
 

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Posted by AliG (Member # 9734) on :
 

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.


 

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Posted by timaca (Member # 6911) on :
 
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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Posted by JRWagner (Member # 3229) on :
 
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.

Thanks again,

Peace, Love, and Wellness,

JRW
 

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Posted by 1Bitten2XShy (Member # 12280) on :
 
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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Posted by timaca (Member # 6911) on :
 
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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Posted by 1Bitten2XShy (Member # 12280) on :
 
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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Posted by AliG (Member # 9734) on :
 
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.

HCMV (aka CMV aka HSV-5?)

(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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Posted by JRWagner (Member # 3229) on :
 
up
 

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Posted by treepatrol (Member # 4117) on :
 
Learning by Phages
 

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Posted by JRWagner (Member # 3229) on :
 
Up...everyone should know their viral status in order to fight Lyme.

JRW
 

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Posted by JRWagner (Member # 3229) on :
 
Timaca, any progress?

JRW
 

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Posted by timaca (Member # 6911) on :
 
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
 

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Posted by JRWagner (Member # 3229) on :
 
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 ]
 

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Posted by timaca (Member # 6911) on :
 
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
 

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Posted by AliG (Member # 9734) on :
 
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 ]
 

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Posted by treepatrol (Member # 4117) on :
 
Pelargonium sidoides (aka "Umcka")- for cold, flu, bronchitis, etc... (Lyme& cos.?)link
 

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Posted by AliG (Member # 9734) on :
 
Thanks Tree!
I don't know why that link was giving me such a problem.
 

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Posted by treepatrol (Member # 4117) on :
 
Dirty little link
 

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Posted by JRWagner (Member # 3229) on :
 
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
 

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Posted by JRWagner (Member # 3229) on :
 
bump...
 

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Posted by JRWagner (Member # 3229) on :
 
Bump sequel...

JRW
 

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Posted by JRWagner (Member # 3229) on :
 
UP...important for those who have not read this info!!!!!

JRW
 

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Posted by timaca (Member # 6911) on :
 
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
 

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Posted by lymewarrior03 (Member # 3891) on :
 
JR............is your friend V still trying Valcite? How's it going?
 

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Posted by JRWagner (Member # 3229) on :
 
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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Posted by timaca (Member # 6911) on :
 
JRW~ Labcorp states on the report that "Single positive antibody titers of greater than or equal to 1:80 may indicate past or current infection." Mine are not that high.

However, I was recently tested for mycoplasma pneumoniae, and that IgG titer came back at 1:64 with the lab stating (Focus lab)...Titers greater than or equal to 1:64 usually suggest recent infection. So, I am checking into the possibility of further mycoplasma testing to rule in or rule out an infection.

There is good info on mycoplasma at:

http://www.cdc.gov/ncidod/eid/vol3no1/baseman.htm

My viral labs had not spiked...so those likely weren't a cause for my downturn. I got some lyme labs back which may be some cause for suspicion, but I'm checking more into the mycoplasma first.

I have pulled out of my downturn (thankfully), only to get a head cold...and experience the wonders (beyond description) of nasal lavage.

Best, Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
Ah yes, the pleasures or nasal lavage...

I too had the same damm cold...everyone in the world has it...

A secret: buy a Fleet's Saline Enema...no kidding...empty contents, fill with warm saline solution...(salt...not too much, and warm water).

PRESTO...the BEST nasal douch you can buy! It really works well.

Mycoplasma...I tested positive years ago...but thought all the ABX I used for Lyme should do the trick...maybe not.


What did your Lyme labs show?

Peace, Love, and Wellness,

JRW
 

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Posted by JRWagner (Member # 3229) on :
 
Tried those kits, as well as Alcholol, a nasal cleanser...NG. Fleet's deal is cheaper and more efficient.

Still have the damm head/neck thing.

Glad you are better Warrior.

Timaca, did your symptoms ever include bad headaches and upper neck pain?

Peace, Love, and Wellness,
JRW
 

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Posted by timaca (Member # 6911) on :
 
JRW~ Here are my current lyme labs:

Igenex IgM: 34, 83-93 + IgG 41, 45
Stonybrook: IgM 18 IgG 30, 41, 45
Focus: IgM nothing IgG 41

Yes, I did and can still have on occasion bad headaches. I have had a creaky neck on and off...and a very stiff neck for 2 weeks...after a bicillin shot.

Timaca
 

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Posted by JRWagner (Member # 3229) on :
 
Thanks Timaca...

Your Lyme WB results will show everyone how different the results from different labs can be...

This is a very scary thought...for example:

Your Focus results...if a regular MD were to have only these, he or she might not diagnose your Lyme Disease...

This is the problem so many others are facing...negative or inconclusib=ve lab results giving rise to a negative diagnosis.

What does your LLMD say about the different results? Did you also get tested for co-infections recently?

Yes, the headache (and neckache)thing...unreal...my eyes are half closed from the pain, and my lower eyelids are swollen...with dark circles.

Great look if I was in a Vampire movie!!!

Be well,
JRW
 

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Posted by WildCondor (Member # 434) on :
 
Back when I had HHV-6 and EBV that were very high, I tried IV Ganciclovir and then oral antivirals to knock the viruses out. It worked, temporarily, but as soon as I stopped the meds, the titers went sky high again. Ironically, a few months later after I started Lyme disease treatment with antibiotics, all my virus counts went back to normal. Moral of the story, treat the Lyme, and the viruses might go back to sleep.
 

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Posted by JRWagner (Member # 3229) on :
 
WC...how are you doing?

Treating the bacterial component was my MO for 14 years...zilch. My viral titers are still high...so, this is not a black and white issue.

Perhaps our viral load is the main component here...not the Lyme...and perhaps not.

Timaca, what did your LLMD say about your newest test results? Dr. Montoya?

Thanks again,
JRW
 

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Posted by JRWagner (Member # 3229) on :
 
up
 

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Posted by AliG (Member # 9734) on :
 
^
 

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Posted by Anneke (Member # 7939) on :
 
Wow, the results on WB bands from Focus, Igenex and Stonybrook are scarily NOT the same. I soooooooooo wish we had a 110% accurate test for this horrible infections!!!!!!!!!!!!!!!!!!!!! It's just nuts that there is still not a reliable test!

I wish we could hear a dialogue between the microbiologists at these labs to see what's up. Why the difference? Does Igenix record more bands?

soooo frustating,

Anneke
 

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Posted by timaca (Member # 6911) on :
 
Sorry for the delayed response. I was out of town for spring break vacation.

I have not yet spoken with my LLMD regarding my recent lyme tests. I hope to do that by the end of April. I see Dr. Montoya in early May, so I'll get his input on my viral/lyme labs at that point in time.

I did not get retested for co-infections.

Wildcondor~ Treating the lyme did not lower the viral titers in me. Hence, I'm now treating the viruses.

My own personal take on my recent tests....
Lyme tests: while some bands came up positive, I am not jumping at a "I have lyme again" conclusion. I will just keep a watchful eye on tests in the future. I will be interested to hear what my LLMD and Dr. Montoya think of these results. (And I have a good idea what each may say--although I won't state those thoughts here).

I am more interested in making sure mycoplasma isn't a player. So, I will check that out further.

I just completed a trip to New Zealand. Something that I thought would be very hard to do. Surprisingly I tolerated the long plane flights and sightseeing better than I thought I would. Other than getting a second head cold,
I did pretty well considering the chronic infections I've been battling.

Now, I'm just going to try to unpack, rest, do laundry, rest and do more resting...to see where I'm at healthwise.

Best, Timaca
 

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