posted
I've had a doctor tell me my inflammation is most likely caused by a virus transmitted by my tick.
Has anyone taken antiviral medication? If so, what was the medication and was is successful?
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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WildCondor
Unregistered
posted
LOL What virus did he mention was caused by the tick bite?
Good grief! Sure ticks can transmit viruses, but bacteria and piroplasms are also a gigantic part of the picture!!
Lyme disease is treated with antibiotics, not antivirals!
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Did your doctor recommend just antivirals, or an antiviral along with antibiotics?
My LLMD has me on an antiviral, Acyclovir, to help keep latent viruses from emerging during treatment. I don't notice anything from it. I still have inflammation.
Plaquenil controlled my inflammation, but I had to stop it because I discovered my body can't process sulfa based drugs.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I saw a neurologist in New York who said he believed my symptoms were not from Lyme but from a virus from my tick.
That is, he doesn't think I have Lyme.
He told me about the viral infection, Tick-Borne Encephalitis, that is common in Europe.
Over there, the virus actually kills a percentage of the victims.
Over here, the virus is not fatal but just can cause symptoms involving the nervous system and others similar to Lyme.
I have neurosymtoms including twiching, floaters, eye pain, tingliing, skin bruising, cramping, etc.
I was on antibiotics for about five months and then my LLMD took me off.
He also did a MELISA test a few weeks back that came back negative.
My LLMD doesn't think I have an active Lyme infection either based on my CD57, C4, and MELISA.
Yet I still have all of these crazy symptoms that never seem to let up.
My LLMD doesn't know how to proceed with treatment and has no more ideas, but I don't know if I just want to stand by while my symptoms only worsen.
My idea is to try antiviral and/or treat for babs. But when I mention it to my LLMD he just doesn't seem to want to prescribe.
Thanks for your replies!
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Hi John,
Many of the llmds are finding patients have high viral loads. Look for posts by Timica about HHV-6. I have a high viral titer (IgG) of HHV-6 and started on low dose pulsed Valcyte. It is bringing my titers down and helping with gut issues.
I would have a panel of viral testing done-- EBV (Epstein Barr), HHV-6 (Focus Labs), CMV, etc.
The viral infections can also cause neuro problems. I have both Lyme and viral problems. Which came first, I don't know, but they weren't found until this past fall.
Go to the website of the HHV-6 foundation and read about the study being conducted at Stanford Univ.
Best.
Artist
PS--I met one llmd (prominent one) who told me that a patient wasn't making progress on antibiotics, so she was placed on Valcyte. It made a HUGE difference. Within a year, woman went from bedridden to skiing. That is a miracle, and I am sure not all respond in kind, but it is encouraging.
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
I've always had EBV as part of my illness. When I found an llmd and started treatment, he had me take olive leaf extract 3 x a day for the EBV while being treated for lyme.
I've also, on my own, taken other things that are antiviral--L-lysine, virustop, oil of oregano, and AHCC. It's been a while since I've felt any viral symtpoms, so maybe it's time to drop some of this.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
You may very well have a "virus" but every single symptom you listed is a symptom of lyme. Period. And the tests don't mean jack. They are very unreliable. I tested negative on my first test, which was an Elisa, only to turn around and test HIGHLY positive on a western blot through Igenix. I would also ask to see the results of your test personally. If you tested positive on any of the bands, and you have symptoms of lyme - then guess what? You have lyme!!!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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ralph
Unregistered
posted
If it really is a virus, there are some herbal blends that IMO are much more effective than drugs.
They are available thru health pros only. They should be able to tell you where you can find them in your area.
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WildCondor
Unregistered
posted
Your doctor sounds ignorant. One tick bite can transmit a ton of different bacterial infections all at once. Sure viruses are part of that, but there is a much larger clinical picture. Lyme disease is a clinical diagnosis (based on symptoms). Negative lab tests mean nothing with Lyme Disease, although a positive Lyme test can help you get your insurance company to pay for long term treatment. Any doctor who tells you that you don't have Lyme Disease because your ELISA,Western Blot etc. was negative is an idiot and you need to get out of there. You absolutely MUST be checked for tick borne co-infections through a Lyme literate lab. You must be checked for Babesia microti, Ehrlichia, both HGE, and HME, Bartonella henselae, and Lyme disease.
Sure you can have a virus too, but for this doc to say you do not have Lyme because your ELISA is negative is blatantly WRONG. CD-57 does not rule out anything either, that is a marker of your killer cells and not a diagnostic endpoint.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
John,
I want to clarify that your LLMD and a seperate neurologist do not think you have Lyme, correct?
Do you know why your LLMD changed your diagnosis? If it is just because of the tests, that does sound suspicious. LLMDs usually use tests as guides only.
How long have you been sick? Five months is not a long time to try treatment if you have chronic Lyme.
You have clearly brought up an issue we are not familiar with, in the viral encephalitis. If you try the antiviral, it will be interesting to know what your success is.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Yes, the neurologist I saw is separate from my LLMD. The neurologist is mainstream who doesn't believe in chronic Lyme.
But he was extremely knowledgeable about the viral infections spread by ticks. He said it takes months to recover from the TBE virus generally.
I read somewhere else that some patients have permanent neurosymptoms from TBE.
I have tested positive for Lyme through IGENEX three times now.
How I got sick, I noticed the tick and had it removed on August 11, 2007 and started on Doxy same day.
The tick was on me for about three weeks I estimate from a hiking trip I took in Virginia on July 21, 2007.
Nine days after starting antibiotics, I felt horrible and the symptoms slowly began to take hold while I took the antibiotics.
I did six weeks of Doxy and then switched to Minocycline and Bicillin via my LLMD, a combo that lasted four months.
So really, I was on about 6 months of antibiotics for a very young infection -- 3 weeks or less.
I've been off antibiotics for three months now without much improvement.
I've had two Fry tests that came back negative for Bart and Babs.
I've also done a number of other tests for other co-infections all negative.
The latest test, the MELISA Lyme test done in Germany, came back negative which means my Lyme is "inactive."
The whole thing leaves me completely confused wondering what I have and what sort of treatment I should pursue.
My LLMD doesn't want me to do anything and thinks it will just take awhile for my nerve cells to regenerate, and then I will be fine.
But I have the same symptoms as I did months ago without much change.
If I had my way, I would just treat for every possibility, starting with babs and viral.
I think I'm going to try seeing another LLMD for a second opinion as soon as I can.
In the meantime, I'm going to try some of the anti-virals suggested above and see what happens.
The tick disease(s) are so miserable. I seriously don't know how people live with Lyme and what not for as long as they do. I've only had to deal with it since August and it's so awful.
Thanks again for the advice and suggestions and help. I really appreciate it.
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Interesting. Definitely sounds like there is a missed coinfection in there. Maybe it is viral. That would explain why some people don't get better on antibiotics.
PM me if you want a referral to another LLMD in northern VA.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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