timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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.
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.
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.
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 ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
So how are you doing on the Valcyte?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
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!
Posts: 425 | From NY, United States | Registered: Mar 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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 ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Geneal -- wow! So you are treating Lyme with abx while on Valcyte? What abx are you doing?
GOOD FOR YOU!
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
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!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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.
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
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!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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 ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
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
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
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.
:-(
Posts: 503 | From Maryland | Registered: Oct 2007
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
tailz
Unregistered
posted
I have high levels of parvo, HHV6, and EBV.
IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
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?
Posts: 269 | From VA | Registered: Jun 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
up
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
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....
Posts: 1155 | From Southeast | Registered: Oct 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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 ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
up...important!
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
posted
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.
-------------------- "Whatever can go wrong will go wrong." Posts: 36 | From Connecticut | Registered: Oct 2007
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
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,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
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...
Posts: 1155 | From Southeast | Registered: Oct 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
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?
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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:
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
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)
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Hmmmmmmmmmmmmmmmmmmm UP!
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
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....
Posts: 1155 | From Southeast | Registered: Oct 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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 ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
up...important!
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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! Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
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.
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.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
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.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
lymeparfait
Unregistered
posted
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
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
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....
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
up
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Timaca...any new results from your blood tests of January 14th?
Hope you are better!
Peace, love, and wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
bumping this thread up for Scott's question on viruses.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
So is that good or bad?
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
posted
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.
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
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[sleepy]](graemlins/sleepy.gif)
Post back if you have questions.
![[Smile]](smile.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Wink]](wink.gif)
![[Roll Eyes]](rolleyes.gif)
![[confused]](graemlins/confused.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic