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 |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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.
posted
I am slightly high in hhv-6 but very high in EBV. My only concern with valtrex is that it says its not supposed to be taken by people with HIV or people with compromised immune systems.
My immune system is definately compromised. So im a little leary about taking it.
Do you know why they say not to take it if you have a compromised immune system?
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Depends on what you are compromised with I suspect. If it is Lyme, my doctor has me on Valtrex and it has not been a problem.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Joe~
Getting tested at Focus will allow you to compare your results to the results of Dr. Montoya's. Different labs use different reference ranges, and more importantly, differently tests. (Like IFA)
If you know your EBV is very high, then you perhaps don't need to spend the money to repeat that test at Focus. Although you could call them to see how much it would cost.
Getting your HHV-6 checked out at Focus, and comparing those results to what Dr. M considers high will help you decide if Valcyte is necessary for you. An HHV-6 of 1:320 to 1:640 or higher at Focus is the cutoff he tends to use.
Best, Timaca
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 |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Since IV Vitamin C seems to be effective against many viruses, has anyone considered doing IV C?
Scott, is there some way to ART test to see if IV Vitamin C might be effective?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Yes, I think so, too, Timaca. And I'm not sure there has been research on some of these viruses using Vit C - like the Herpes viruses. I have not kept up with that in recent years.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
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 again...important stuff!
[ 29. January 2008, 11:12 AM: Message edited by: JRWagner ]
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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 ]
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...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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
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
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
1Bitten2XShy
Unregistered
posted
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.
IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
OneBitten2xShy~
Welcome to the valcyte bandwagon. Glad to have you on board!
I have some concerns about what you posted. First, he has you on 900 mg for a month and he'll see how you do. That's well and good as long as he doesn't expect you to feel better in a month. If you have HHV-6 infection, you are likely to feel worse the first month.
Many people don't feel better until 4 months into their valcyte treatment. Some don't feel better until they are off the drug.
So if he takes you off the drug at 1 month because you aren't feeling better, that isn't a good reason.
Also, make sure you are having weekly labs for the first 3 weeks. You need to see how your CBC (especially your WBC and absolute neutrophil count) does with the valcyte. Then do labs every other week for a while, then monthly (I get CBC, UA, and CMP).
Dr. Montoya's protocol is a bit different. He has people on 900 mg twice a day for the first 3 weeks, then dropping to 900 mg daily to complete 6 months.
Best wishes on the valcyte! Do lots of reading at www.hhv-6foundation.org and post on the patient's section there!
Glad your LLMD is willing to treat the HHV-6! Good for him!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
1Bitten2XShy
Unregistered
posted
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.
IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I remember Stymie talking about a good antiviral a while back. I don't recall which one.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
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!
![[Wink]](wink.gif)
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.![[Smile]](smile.gif)
![[Roll Eyes]](rolleyes.gif)
![[Frown]](frown.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic