Hi all,

I have noticed that when I ease up on the antibiotics - my neck and spine pain really increase. I have severe neck and spine pain at night (and a low-grade fever of 2 yrs - 99.5-100.5).

Are there "bugs" associated with spine and neck pain? Which ones?

Thanks so much for your help and wisdom!

God Bless,

Elisabeth

Hi,

Yes, Borrelia burgdorferi (lyme) is a complex bacterial infection that causes neurological symptoms such as neck pain....and lots of other possible symptoms.

Borrelia is often associated with other infections such as bartonella, babesia, ehrlichia, etc.


Here's a great resource......


http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Hi Nanie46,

For me, Lyme is the lurking diagnosis - meaning I always wonder but I haven't found a doctor with knowledge.

I did take an Ingenex test - but can't find a doc to interpret it. I even posted it here - maybe I will again.

I was diagnosed with Lyme 20+ yrs ago and they treated me with a few weeks of antibiotics. They also thought it could be RA (I had a positive RA factor back then.) But who knows...I wish someone would come up with some definative testing methods.

I did read about the CD57 test - as a possible determining test for long-term Lyme people.

Anyway, thank you so much for your help and imput - I will read the link.

God Bless,

Elisabeth

[This Message was Edited on 08/17/2009]

The Epstein Barr Virus tends to reside in the tendons on the left side of the neck and HHV6 has been found throughout the Basil Ganglia and spinal fluid of some PWC. I'm sure there are more too.

as well as the above you should consider chicken pox and or shingles and consider childhood virus.s reactivating perhaps

http://stanford.wellsphere.com/lyme-disease-article/lyme-disease-a-complex-illness/733631

I have heard of severe neck and spine pain from a very large percentage of people that go on Valcyte and other antiviral treatments. I had pain in my neck when I first started taking olive leaf. So lyme, herpes viruses, maybe just a wide variety of pathogens migrate there during long-term chronic infections.

teejkay, I had no idea that Epstein-Barr likes to reside in the tendons on the left side of the neck. This is extremely fascinating news to me because I'm a post-EBV case and about two months ago I started taking inosine, an antiviral, and promptly injured something in the left side of my neck. I couldn't turn my head to the left for weeks and my head was laterally misaligned with the rest of my body, and I had excruciating pain. It is mostly better but still not 100%.

I have asked similar questions in the past about back and neck pain in relations to cfs. I have also read that the english girl sophia who died of cfs, when they examined her spine it was extremely abnormal, supposedly infected with alot of herpes virues(ebv,cmv, etc).

if cfs is a neurological illness, then the spinal cord and neves are apart of that.

CfS since-- yep, I've had many episodes like that with my neck ever since I was a kid. Doctors would tell me I slept wrong. Yeah right.

Heapsreal-- I also found it amazing when Dr. Peterson was restating this at the CFSAC meeting. He was saying how they didn't find HHV6 in her blood or spinal fluid but found it in her brain. Her ganglia was really infected.

This is a big problem for us. They were saying at the CFSAC that they would have to do biopsies to find these viruses in us. I say, no thanks, I'd rather try the drugs, if they don't work anyway then what's the point of finding it and if they do work, hurray! you get your life back.

Hi LonelyHearts -- Did you respond well to Valcyte? I was on it for 7 months but I never felt any better, only worse.


tee

Hi, Elisa.

I'm sorry to hear about this pain in the spine and neck. The fact that they get worse when you ease up on abx suggests that they are due to bacteria or protozoa, rather than to viruses or fungi.

I hope you will pursue the possibility that Lyme disease or its coinfections are involved. You will probably recall that I suggested Babesiosis as a good possibility some time ago. I still think that is a good candidate, given the ongoing fever. Maybe you can find a doctor in your area who is familiar with these diseases from the ILADS website.

There are other treatments beside abx that may be needed. I would suggest particularly looking into Dr. Lee Cowden's herbal treatments. In the new book Insights into the Treatment of Lyme Disease, by Connie Strasheim, he describes his experience in successfully treating a number of patients who had either Bartonella or Babesia. Abx failed to help these patients, but the herbal treatments worked.

I would really like to see you beat this thing, Elisa.

Best regards,

Rich

Hi CFS since 1998, interesting to hear you are taking inosine, may I ask what sort of dose you are on and does anyone have any refernces on inosine as an antivial, I've read of Cheney recommending it but never heard of it being used in this way before.

Just to be contrary, I had epstien barr in 1980 then later that year cosackie b3, an enterovirus, and both homed in very much in my spine and brain, still got painful next to my spine on both sides but worst on the RHS.Also I have a lot of problems with my back "going out" of alignement ever so slightly, ligamnets seem to be wonkey and I have to get ti repeatedly re[etedly manipulated as it is v painfulwhen out. Spial area is v sensitive and muscles round about in spasmm, agsin they were badly affected by these viruses.

When I told my GP at the time of the EB infection that my spine was so painful and inflammed, with inflammation moving slowly but perceptably up my spine over a cuple of days and then round my brain with a feeling of my spine and brain being squeezed and v inflammed, then a load of weird syptoms relating to my perception of my body shape and temp control both of which I still have to a degree 3o years on, he looked at me as if I was completely bonkers, he didn't seem to beileve the severity of what I was going through and later was just appalling.

Anyway I've found problems with both sides of spine and mostly RHS of brain and head, feel as if RHS of head is squashed in at my R eye near the top and that part of my face is all deformed. Not aware of this all the time just at times. Also feel one side of my body is different to the other. LHS feels much larger, RHS feels sort of darker, can't explain other way. What a strange body!

Hi CFS since 1998, interesting to hear you are taking inosine, may I ask what sort of dose you are on and does anyone have any refernces on inosine as an antivial, I've read of Cheney recommending it but never heard of it being used in this way before.

Just to be contrary, I had epstien barr in 1980 then later that year cosackie b3, an enterovirus, and both homed in very much in my spine and brain, still got painful next to my spine on both sides but worst on the RHS.Also I have a lot of problems with my back "going out" of alignement ever so slightly, ligamnets seem to be wonkey and I have to get ti repeatedly re[etedly manipulated as it is v painfulwhen out. Spial area is v sensitive and muscles round about in spasmm, agsin they were badly affected by these viruses.

When I told my GP at the time of the EB infection that my spine was so painful and inflammed, with inflammation moving slowly but perceptably up my spine over a cuple of days and then round my brain with a feeling of my spine and brain being squeezed and v inflammed, then a load of weird syptoms relating to my perception of my body shape and temp control both of which I still have to a degree 3o years on, he looked at me as if I was completely bonkers, he didn't seem to beileve the severity of what I was going through and later was just appalling.

Anyway I've found problems with both sides of spine and mostly RHS of brain and head, feel as if RHS of head is squashed in at my R eye near the top and that part of my face is all deformed. Not aware of this all the time just at times. Also feel one side of my body is different to the other. LHS feels much larger, RHS feels sort of darker, can't explain other way. What a strange body!

Hi genevieve,

There is a drug used in Europe as an antiviral, actually I think it is more of an immune modulator, called Immunovir. It is also called Isoprinosine or Inosine Pranobex. A few CFS doctors have said you can use plain over the counter inosine as a substitute. Dr. DeMeirler in Belgium said this, and I think this is why Dr. Cheney uses it. I know he used to use Immunovir and now he uses inosine though I haven't heard him say directly you can use in place of the other.

I can relate to what you said about your spin and ligaments going out, etc. I have the pain on the sides of the spine too. In February of this year I started taking as many natural antivirals as I could find, I started with olive leaf and lauric acid/monolaurin. I got a massive headache as if my brain was inflamed and general neck pain as well. But also whenever I moved around I heard a lot of joints cracking--in my back and neck and even jaw (I also had severe TMJ issues at the time). It felt like my connective tissue was disintegrating.

Whenever these feelings started to go away I would up the dosage of the supplements I was on and they would come right back. Eventually I got to the highest dose I could reasonably take and after a few months most of these symptoms faded away to a low level.

Anyway, so after that was around that time I decided to try inosine. I decided to follow a pulsing dose, where you alternate high and low doses each week and don't take it on the weekends. You also do 8 weeks on and 4 weeks off. Early in my first "round" of inosine I somehow injured a vertebrae in my lower back, in the lumbar area. I don't know what happened but it actually had a big bruise around it. Then, it was actually during the second round, but only the second or third day after restarting after the month long break, that I had the injury in the left side of the neck.

The dose I've been following starts on the higher dose (6 tablets/day) the first week and is the lower dose (2 tabs/day) the second week. I think I may switch the order next time and do low the firt week, high the second, etc. Maybe this will prevent shocking the body and prevent injuring something again. Also I think I may try 4 weeks on and 2 weeks off instead of 8 on and 4 off because it really feels like it's having an effect the first couple of weeks. I can see why pulsing is suggested.

When I first learned about inosine I had written a blog post about it, you can find it here: http://cfsendeavor.blogspot.com/2009/06/imunovir-versus-inosine.html

[This Message was Edited on 11/06/2009]

hey cfssince98, do you feel better now than you did in 08? Has it been worth it yet to go thru these hassles? I have been doing similar experimentation this year, not as focused as yours, and had flares from it too, and sometimes do feel better once go off the stuff than I did before I think, but not sure, and I want to know its worth it to take these antivirals if its making me feel worse, its hard to know how long to hang in there w/it.

I really can't say. There was definitely a period where I felt worse, but it seems everyone one immune modulators and antivirals experiences that. I guess I could say I feel a little improved but it's so hard to measure. I definitely feel the treatment is having an effect on my infections so I'm going to keep at it, and now that we know about XMRV I'm soon going to try out supplements that are suggested to have an effect on retroviruses and also will try to reduce inflammation as Dr. Mikovits suggested.

what does doc mikovitz say to do for inflammation?
yes, I am going to keep playing with inosine, artesunate and wormwood in small doses once in while, as too much flare if too much too often.

I heard on Cort's forum she mentioned Aleve, Advil, or Celebrex. I started taking ginger for inflammation a few days ago. I will probably wait awhile longer before I try even OTC drugs due to potential side effects from long term use.

Thanks for the info on your your inosine treatment and on immunovir.

I've treid olive leaf and take if for cold/flu too and find it to be helpful

Not tried lauricidin but am seriously thinking of using it as it sounds v interesting.

BW,

genevieve