EBV symptoms when overdoing?

[Sheva N.]

Hi!
I've had ME/CFS for over 20 years after a bout of flu. I had not been feeling well for over a year before that but just pushed on working, etc - sound familiar? What I did not know was I also had EBV - Epstein Barr Virus. I have been on Valtrex - 1 Gram twice daily for years now and it generally keeps my viral symptoms under control. I have tried reducing the dose but literally can barely stagger into my bed after 48 hours. Lately I find that if I allow myself to tire the viral symptoms become very strong and only rest, Tylenol and fluids will help get me back to my baseline and semi functional. Has anyone else experienced this? Is anyone using something that helps? Would love to hear from you! Sheva

 

[cordkel]

Hi Sheva,
I have found glutathione IVs help restore me to baseline. I've even found that simple saline IVs are helpful when I'm in relapse. Unfortunately, IV treatments are not cheap.

I am currently experiencing a scary prolonged relapse. I'm wondering if you might have some thoughts...

I have had ME/CFS for over 9 years and currently under the care of Dr. Chheda at the Clinic for Complex Diseases in Mountain View. She has been treating my EBV with 1 gram of Valtrex three times a day. Prior to her engagement I was with Dr. Montoya at Stanford who had me on 1 gram 2x a day. A year ago my red blood cell count dropped below normal which I attributed to the long-term valtrex. Mid-April, after some corroborating research, I decided to discontinue the Valtrex and start a course of L Lysine and Olive Leaf Extract as a substitute. Within a month my blood levels normalized! My energy levels remained good (or at least good for me...). Mid July, three months later, after a brief relapse (and recommendation of Dr. Chheda) I started back on the Vatrex - titering up to the 3 gram daily program. I have not improved at all during the subsequent 3.5 weeks. In fact, things have deteriorated somewhat. My migraine medication is no longer effective and I'm basically housebound. I'm trying to be optimistic and would like to consider this a hertzing reaction...but I don't think it is.

Cord

 

[Sheva N.]

Hi Sheva,
I have found glutathione IVs help restore me to baseline. I've even found that simple saline IVs are helpful when I'm in relapse. Unfortunately, IV treatments are not cheap.

I am currently experiencing a scary prolonged relapse. I'm wondering if you might have some thoughts...

I have had ME/CFS for over 9 years and currently under the care of Dr. Chheda at the Clinic for Complex Diseases in Mountain View. She has been treating my EBV with 1 gram of Valtrex three times a day. Prior to her engagement I was with Dr. Montoya at Stanford who had me on 1 gram 2x a day. A year ago my red blood cell count dropped below normal which I attributed to the long-term valtrex. Mid-April, after some corroborating research, I decided to discontinue the Valtrex and start a course of L Lysine and Olive Leaf Extract as a substitute. Within a month my blood levels normalized! My energy levels remained good (or at least good for me...). Mid July, three months later, after a brief relapse (and recommendation of Dr. Chheda) I started back on the Vatrex - titering up to the 3 gram daily program. I have not improved at all during the subsequent 3.5 weeks. In fact, things have deteriorated somewhat. My migraine medication is no longer effective and I'm basically housebound. I'm trying to be optimistic and would like to consider this a hertzing reaction...but I don't think it is.

Cord

Hi Cord,
Please excuse delay - there are days when I cannot be on computer due to sensory issues. I understand how scary it is to relapse but you will recover with lots of rest and I mean lots! I have had crashes that lasted months but I also know I didn't listen to my body when it was screaming for rest but I wanted so badly to do just this one thing more or one phone call or.... fill in the blanks. it's also difficult when friends or family can't understand how you're not better after two days of lying in bed and there is this underlying pressure to "act normal." I joked to my doctor that I am going to write a book entitled How to Lose Friends and Alienate People! Seriously, I also find salt helps me and if you google Dr. Paul Cheney glookinaid drink he gives the recipe for a homemade elctrolyte drink. Lately I just make up a bottle of Himalayan sea salt with water and drink it throughout the day which helps. I decided to try the Nicotine Patch test which you can read about on the forums and I listened to Dr.Marco Leitzke on You Tube explaining his findings and how to use them. I was treated for a long time by Dr. Leo Galland here in N.Y. - an outstanding physician but VERY expensive and I remember him telling me that I have chronic active viral infections. Right now there is no cure for viruses but hopefully all the current research will produce results that will help us. Wishing you all the best - Sheva

 

[cordkel]

Hi Cord,
Please excuse delay - there are days when I cannot be on computer due to sensory issues. I understand how scary it is to relapse but you will recover with lots of rest and I mean lots! I have had crashes that lasted months but I also know I didn't listen to my body when it was screaming for rest but I wanted so badly to do just this one thing more or one phone call or.... fill in the blanks. it's also difficult when friends or family can't understand how you're not better after two days of lying in bed and there is this underlying pressure to "act normal." I joked to my doctor that I am going to write a book entitled How to Lose Friends and Alienate People! Seriously, I also find salt helps me and if you google Dr. Paul Cheney glookinaid drink he gives the recipe for a homemade elctrolyte drink. Lately I just make up a bottle of Himalayan sea salt with water and drink it throughout the day which helps. I decided to try the Nicotine Patch test which you can read about on the forums and I listened to Dr.Marco Leitzke on You Tube explaining his findings and how to use them. I was treated for a long time by Dr. Leo Galland here in N.Y. - an outstanding physician but VERY expensive and I remember him telling me that I have chronic active viral infections. Right now there is no cure for viruses but hopefully all the current research will produce results that will help us. Wishing you all the best - Sheva

Hi Sheva,
Thanks for your thoughtful reply. Yes, managing relationships is very difficult. I never feel as though I'm getting the support I need. Basically after nine years and an incredible amount of work and dedication to resolving my issues, I just want sometimes to be acknowledged for my effort. Actually, I'd like more than that...but understanding human nature as it is, I have to let it go.

Currently, I'm treating MAST cell dysfunction, or "alleged" MAST cell dysfunction. It is so difficult evaluating treatments when under the hammer of so many co-infections. Currently I'm starting treatment with Sodium Cromolyn, Ketotifen and Quercetin which will be in addition to the Valtrex for EBV, the Rawl's herbs for Lyme, the LDN and the rest of the general supplemental support. It's too much...

I would like to try the nicotine patch at some point. Do tell how it works for you.

Sleep is one of my big issues. Do you have problems sleeping? I have found that besides cutting back on monitor screen time, hot Himalayan salt baths and meditation before bed, klonopin is the only drug or herb that helps me and I have to constantly taper down every year or so so I don't build up a more dangerous dosage. Rinse and repeat. I hate doing it but I haven't found anything else that works.

Best in health!

Cord

 

[Tammy7]

A year ago my red blood cell count dropped below normal which I attributed to the long-term valtrex. Mid-April, after some corroborating research, I decided to discontinue the Valtrex and start a course of L Lysine and Olive Leaf Extract as a substitute. Within a month my blood levels normalized! My energy levels remained good (or at least good for me...). Mid July, three months later, after a brief relapse (and recommendation of Dr. Chheda) I started back on the Vatrex - titering up to the 3 gram daily program. I have not improved at all during the subsequent 3.5 weeks. In fact, things have deteriorated somewhat. My migraine medication is no longer effective and I'm basically housebound. I'm trying to be optimistic and would like to consider this a hertzing reaction...but I don't think it is.

Have you considered going back on the L-lysine and Olive Leaf?

I have been taking herbal anti-virals as well as L-lysine for the past 8 yrs. I am not cured but I do feel like it keeps my EBV in check. I still have physical challenges but I no longer feel like I have that miserable 24/7 flu-like feeling anymore which is a huge plus.

The natural anti virals that I take are:

Cats Claw
Licorice root
L-lysine
Propolis
I have taken olive leaf before but I was kind of sensitive to it. (may try it again)
Lemon Balm


I don't take all these at the same time but I do try and keep at least 2-3 in my system at all times and then sometimes I will rotate them.

I would be willing to try prescription anti-virals but have not found a Dr. who is willing to experiment with them.

You mentioned your red blood cells getting low and you thought that maybe it was from the Valtrex? Is this a known side effect of Valtrex? I follow Anthony William and according to him our red blood cells can get low due to the EBV which loves to feed off iron.

Sending hugs and well wishes to both you and @Sheva N.

 

[cordkel]

Have you considered going back on the L-lysine and Olive Leaf?

I have been taking herbal anti-virals as well as L-lysine for the past 8 yrs. I am not cured but I do feel like it keeps my EBV in check. I still have physical challenges but I no longer feel like I have that miserable 24/7 flu-like feeling anymore which is a huge plus.

The natural anti virals that I take are:

Cats Claw
Licorice root
L-lysine
Propolis
I have taken olive leaf before but I was kind of sensitive to it. (may try it again)
Lemon Balm


I don't take all these at the same time but I do try and keep at least 2-3 in my system at all times and then sometimes I will rotate them.

I would be willing to try prescription anti-virals but have not found a Dr. who is willing to experiment with them.

You mentioned your red blood cells getting low and you thought that maybe it was from the Valtrex? Is this a known side effect of Valtrex? I follow Anthony William and according to him our red blood cells can get low due to the EBV which loves to feed off iron.

Sending hugs and well wishes to both you and @Sheva N.

Thanks, Tammy7. My strategy is to alternate between a course of Valtex and the L-lysine, Olive Leaf combo. I'm concerned about digesting any one substance constantly year in and year out so this seems a good strategy for long term EBV treatment.

I can't site the case study that I found corroborating my inkling that my long term use of Valtrex caused or at least contributed to my low red blood cell count but I did find one. The case was not ME/CFS related. My doctor, Dr. Chheda had stated (she may believe differently now) that there was no connection, however within a month of replacing the Valtex with the L-lysine combo my blood count was normalized. The low count was not an outlier, I had tested low for many months.

Good health!

Cord

 

[duckcove]

Hi Sheva,
Thanks for your thoughtful reply. Yes, managing relationships is very difficult. I never feel as though I'm getting the support I need. Basically after nine years and an incredible amount of work and dedication to resolving my issues, I just want sometimes to be acknowledged for my effort. Actually, I'd like more than that...but understanding human nature as it is, I have to let it go.

Currently, I'm treating MAST cell dysfunction, or "alleged" MAST cell dysfunction. It is so difficult evaluating treatments when under the hammer of so many co-infections. Currently I'm starting treatment with Sodium Cromolyn, Ketotifen and Quercetin which will be in addition to the Valtrex for EBV, the Rawl's herbs for Lyme, the LDN and the rest of the general supplemental support. It's too much...

I would like to try the nicotine patch at some point. Do tell how it works for you.
ks f
Sleep is one of my big issues. Do you have problems sleeping? I have found that besides cutting back on monitor screen time, hot Himalayan salt baths and meditation before bed, klonopin is the only drug or herb that helps me and I have to constantly taper down every year or so so I don't build up a more dangerous dosage. Rinse and repeat. I hate doing it but I haven't found anything else that works.

Best in health!

Cord

Greetings. I have battled CFS for 33 years. Sleep has always been an issue for me. My body would be much happier running on a 26 or 27 hr day. Good sleep hygiene is a must. Anyway, I finally have a good mix that works for me. I take this every single night, about 1 hr before bed. 5mg generic Ambien (to get me to sleep), .5 ml doxepin ( that's right, only 1/2 ml)(helps me sleep from 3am onward), 2.5mg melatonin, and 4.5mg LDN (have to start low and build up). Now I consistently get 8 hrs of good sleep. Don't over do the long sleep, that will backfire. A regular schedule is a must. I tried upping the doxepin and cutting back on the Ambien, that didn't work. Good sleep has greatly helped with my poor short-term memory. It hasn't done much for my low energy though. Hope this helps.

 

[cordkel]

Thanks duckcove,
I've never tried Doxepin. I'll try it. Ambien does work too well for me... Lately I've been taking 2 mg of the antihistamine Ketotifen (one of my MAST cell inhibitors) before bed and a combo of Gaba, Apigen and L-theanine when I wake up in the middle of the night. The inclusion of .25mg - .5mg of Klonopin works best but I'm currently tapering off of the bene which I do every few years.

 

[cordkel]

Typo - Ambien does not work too well for me..

 

[Zapped]

Is anyone using something that helps? Would love to hear from you! Sheva

I‘m over 30+ years in with similar illness profile. I’m wondering if your apparent correlation with positive betterment really a disguise for just the opposite affect? IOW, might you have been better all along without the Valtrex, presenti a false positive, especially if the MECFS symptons are caused by the HEPA system being stuck on wide open (up regulated), initially started in motion (mediated) by the EBV?

This is the case with me, actually precipitated by another virus, the CMV, which an infectious disease specialist, MD, discovered back in 1991, after already having been laid low. IMO, looking back, the best medicine for me was Klonopin, which tamed the HEPA affects by slowing down its process. I realize it has been a controversial subject but it is being revisited - with success in some PWCs. I’m a pragmatist: if it works turn on the switch!

 

[Bufeyberry]

Typo - Ambien does not work too well for me..

Thanks, Tammy7. My strategy is to alternate between a course of Valtex and the L-lysine, Olive Leaf combo. I'm concerned about digesting any one substance constantly year in and year out so this seems a good strategy for long term EBV treatment.

I can't site the case study that I found corroborating my inkling that my long term use of Valtrex caused or at least contributed to my low red blood cell count but I did find one. The case was not ME/CFS related. My doctor, Dr. Chheda had stated (she may believe differently now) that there was no connection, however within a month of replacing the Valtex with the L-lysine combo my blood count was normalized. The low count was not an outlier, I had tested low for many months.

Good health!

Cord

This is more a reply to everyone here. When stopping Valacyclovir, is it recommended to taper off? I had Ramsey Hunt Syndrome complete with terrible ear lesions and all. When we started Valacyclovir it took many months to get it under control. No sooner than lesions we’re starting to heal, more we’re constantly breaking out. Every two weeks (plus or minus) it was like a viral attack. I’d feel severe body aches and have a a fever, sometimes low grade, and sometimes over 101+. It was like I could feel the VZV moving around my body and I’d have areas far away from the ear/neck/face areas start to itch and burn. Sometimes lesions would pop up in these distant areas, but not as intense as the ones in the trigeminal region. Then it felt as though it made its way back “home” to that cozy area it prefers. The final landing back to that same area brought lesions on back of neck, some in scalp, left side of my face/ear/forehead/chin/eye. This has been going on for well over 2 yrs. I would have to look back at my medical history on my portal for the exact dates, but something around that amount of time. I suffered with severe PMS/PMDD for a long time, and I’m 52 now, and it’s starting to wax and wane. I do know that for women, VZV and other type viruses, can be greatly impacted by our monthly cycles. Anyway I had trigeminal neuralgia at the start of this as well. I’ve been taking 1 gram of Valacyclovir per day, since it started. I’ve read conflicting reports on this medication, especially when taken long term. My PCP has been firm, that going over 1gram is not a good idea, and wouldn’t have a big impact. He said only when it’s first hitting could I double the dosage for no more than a week. I never have done this. I feel distinctly that at best the valacyclovir is just keeping it beat back and sort of at bay. I’m very in tune with my body and I really feel like I need to at least stop the valacyclovir for a while. I’d love to know if tapering has been beneficial for anyone, opposed to stopping valacyclovir cold Turkey. My level of ME is very severe and we are trying to control symptoms and get my IVIG infusions for my CIDP set back up at home. My neurologist is wonderful with her neuromuscular subspecialties, but she has never treated a patient with ME and CIDP. CIDP is chronic inflammatory demyelinating polyneuropathy. It is best described as the chronic counterpart of Guillane Barre. I’ve had it since an acute onset in 2015, but it wasn’t correctly diagnosed until 2016, about 6 or 7 months after onset. Currently the trigeminal areas mentioned still feel tingly, itchy, hot, painful, and like it’s trying to form lesions, but they present way less severely than they were. Maybe I’m making a mistake by stopping the valacyclovir, but it’s just something that I feel I need to try. My baseline dove after all of this and having Covid. I was already homebound and bedridden other than still being able to tolerate laying in the couch some. Now I’m completely bedridden, other than toileting with difficulty. Other than PEM, my most troublesome symptom is unimaginably severe, widespread pain. Also gastrointestinal issues that wax and wane. Some days I’m starving and can’t get enough to eat and some days I’m not able to eat at all. My most dramatic weight loss was during all the viral hits. I lost over 40 lbs, but thankfully I could afford to. I’ve gained about 10 back, and if I can continue to be able to tolerate food, hopefully I won’t progress at least as far as that part goes. I’ve been sick for so long, that I am accustomed to handling life from my bed. It happened so gradually over such a long period of time, that I think I acclimated to it. I miss my life of course, but I could “tolerate” all of these things better, if I could get the pain under control. That’s the absolute worst part of this in many ways. I don’t think it’s at all possible for my body to have any chance at any type recovery when I’m writhing in constant pain. I often wonder what makes some patients feel this terribly debilitating pain, and others not. Like what exactly is causing the severe pain part of this illness, I just don’t understand that part of it at all. I hope everyone is getting by as best they can and I’m so thankful to have this informative group. ♥️

 

[cordkel]

Hi Bufeyberry, Your situation is heartbreaking. Thanks for sharing it. I have been prescribed Valacyclovir "for life" because I have a zero NK or killer cell count - no first line of defense against EBV and herpes 6 so I can offer no insights as to your particular struggle. However, I stopped a long-term 3,000 mg per day program cold turkey and didn't notice any side events. After a hiatus of three months using the alternative of L-lysine and Olive Leaf I'm back on a lower dose of 2000 mg per day.

Stay strong and stay connected. All the best to you!

 

[cordkel]

I‘m over 30+ years in with similar illness profile. I’m wondering if your apparent correlation with positive betterment really a disguise for just the opposite affect? IOW, might you have been better all along without the Valtrex, presenti a false positive, especially if the MECFS symptons are caused by the HEPA system being stuck on wide open (up regulated), initially started in motion (mediated) by the EBV?

This is the case with me, actually precipitated by another virus, the CMV, which an infectious disease specialist, MD, discovered back in 1991, after already having been laid low. IMO, looking back, the best medicine for me was Klonopin, which tamed the HEPA affects by slowing down its process. I realize it has been a controversial subject but it is being revisited - with success in some PWCs. I’m a pragmatist: if it works turn on the switch!

Hi Zapped, I discovered the relieve that klonopin delivers by accident years ago. I've used it at night to help sleep for over 7 years to help with my insomnia. Interestingly, the first ME informed physician I worked with, Dr. Kendall Stewart in Austin TX, prescribed it in his initial protocol! The problem with it and all benzodiazepines is that the drugs are addictive and require increased dosing to remain effective. I effort a bi-yearly tapering down to control that mechanism. Wash, rinse and repeat! Currently, I am off it and finding that the nightly 2 mg of Ketotifen I'm taking as part of my MAST cell regulation gets me through the night.

 

[Bufeyberry]

Hi Bufeyberry, Your situation is heartbreaking. Thanks for sharing it. I have been prescribed Valacyclovir "for life" because I have a zero NK or killer cell count - no first line of defense against EBV and herpes 6 so I can offer no insights as to your particular struggle. However, I stopped a long-term 3,000 mg per day program cold turkey and didn't notice any side events. After a hiatus of three months using the alternative of L-lysine and Olive Leaf I'm back on a lower dose of 2000 mg per day.

Stay strong and stay connected. All the best to you!

Thanks so much for replying. I think sometimes deep down we hope that there’s some type of trigger that has been pulled and that we can possibly reverse it. I mean one that we can control anyway. Probably wishful thinking that stopping valacyclovir could somehow relieve my symptoms. Thanks for letting me know your experience with stopping your high dosage of it. I will probably stick with what my PCP recommends me to do. I wish I could get to one of the specialty centers or to The Mayo Clinic Rochester. That’s where my PCP and Neurologist think I need to go. They said they’d write the referral and then Mayo would have to accept me or not. Unfortunately though, even if I could somehow tolerate the trip there, it’s highly doubtful that my insurance would approve it. It’s so hard to navigate insurance while being this ill. I am constantly trying desperately to find help and wearing myself out reading and just trying to make something happen. Then the pain and exhaustion become so horrific, I can’t think straight or even move at all for a long while. I’m pretty angry at the failure of the “system”, and the whole history of how ME has been handled, so my attitude about that is surely detrimental. I have always been a fighter and I can’t stand to see myself or others wronged. It’s a vicious cycle for sure. Thanks again for your time and comments. Take care. ♥️

 

[GrammaLinda]

Thanks so much for replying. I think sometimes deep down we hope that there’s some type of trigger that has been pulled and that we can possibly reverse it. I mean one that we can control anyway. Probably wishful thinking that stopping valacyclovir could somehow relieve my symptoms. Thanks for letting me know your experience with stopping your high dosage of it. I will probably stick with what my PCP recommends me to do. I wish I could get to one of the specialty centers or to The Mayo Clinic Rochester. That’s where my PCP and Neurologist think I need to go. They said they’d write the referral and then Mayo would have to accept me or not. Unfortunately though, even if I could somehow tolerate the trip there, it’s highly doubtful that my insurance would approve it. It’s so hard to navigate insurance while being this ill. I am constantly trying desperately to find help and wearing myself out reading and just trying to make something happen. Then the pain and exhaustion become so horrific, I can’t think straight or even move at all for a long while. I’m pretty angry at the failure of the “system”, and the whole history of how ME has been handled, so my attitude about that is surely detrimental. I have always been a fighter and I can’t stand to see myself or others wronged. It’s a vicious cycle for sure. Thanks again for your time and comments. Take care. ♥️

. I am constantly trying desperately to find help and wearing myself out reading and just trying to make something happen. Then the pain and exhaustion become so horrific, I can’t think straight or even move at all for a long while. I’m pretty angry at the failure of the “system”, and the whole history of how ME has been handled, so my attitude about that is surely detrimental. I have always been a fighter and I can’t stand to see myself or others wronged. It’s a vicious cycle for sure.

My thoughts exactly. The ”system” has not improved with the implementation of HMOs. I had to join Kaiser due to my move to a different county 7 yrs ago. Last year I revisited alternatives such as MS, Myeloma, Myasthenia Gravis - you know, something others had actually heard of. I was refused referral to Mayo or any other high visibility clinic. My Kaiser PCP wanted testing that I was having to wait months for and I told him just hospitalize me so we can get this done quicker. He told me he cannot admit me to a hospital. I was stunned and after months I still cannot accept that my PCP can’t hospitalize me. I was used to private practice doctors who actually practiced medicine and were not dictated to by a massive for profit organization that ties their hands and prohibits the actual practice of medicine by doctors who went to school to actually help people. Now these doctors are using AI as they are typing in notes during our visits. I have read the notes post visit and there are words and phrases listed that this patient did not say! I have had to calm myself and learn acceptance. I am tired of being referred to the mental health department. After almost 30 years of this and at the age of 76 I have learned to calmly manage but I am open to alternatives and new information, which is why I am on this site. Keep calm - that’s the only answer.

 

[Bufeyberry]

. I am constantly trying desperately to find help and wearing myself out reading and just trying to make something happen. Then the pain and exhaustion become so horrific, I can’t think straight or even move at all for a long while. I’m pretty angry at the failure of the “system”, and the whole history of how ME has been handled, so my attitude about that is surely detrimental. I have always been a fighter and I can’t stand to see myself or others wronged. It’s a vicious cycle for sure.

My thoughts exactly. The ”system” has not improved with the implementation of HMOs. I had to join Kaiser due to my move to a different county 7 yrs ago. Last year I revisited alternatives such as MS, Myeloma, Myasthenia Gravis - you know, something others had actually heard of. I was refused referral to Mayo or any other high visibility clinic. My Kaiser PCP wanted testing that I was having to wait months for and I told him just hospitalize me so we can get this done quicker. He told me he cannot admit me to a hospital. I was stunned and after months I still cannot accept that my PCP can’t hospitalize me. I was used to private practice doctors who actually practiced medicine and were not dictated to by a massive for profit organization that ties their hands and prohibits the actual practice of medicine by doctors who went to school to actually help people. Now these doctors are using AI as they are typing in notes during our visits. I have read the notes post visit and there are words and phrases listed that this patient did not say! I have had to calm myself and learn acceptance. I am tired of being referred to the mental health department. After almost 30 years of this and at the age of 76 I have learned to calmly manage but I am open to alternatives and new information, which is why I am on this site. Keep calm - that’s the only answer.

It’s like that everywhere now. My PCP said they can’t really do direct admits now. I’m also very bad off with my neuro stuff and way behind on IVIG. My neurologist, who is at a university hospital cannot admit me either. I know they can’t admit us just to make testing easier, I mean I get that. But I’m terribly ill, and need to be admitted so they help me, as well as manage me while performing tests. It’s just awful. Good luck to you, I can’t believe you’ve gone through this for 30 yrs! 🥺♥️🙏

 

[GrammaLinda]

It’s like that everywhere now. My PCP said they can’t really do direct admits now. I’m also very bad off with my neuro stuff and way behind on IVIG. My neurologist, who is at a university hospital cannot admit me either. I know they can’t admit us just to make testing easier, I mean I get that. But I’m terribly ill, and need to be admitted so they help me, as well as manage me while performing tests. It’s just awful. Good luck to you, I can’t believe you’ve gone through this for 30 yrs! 🥺♥️🙏

Thank you for the reply - So sorry to hear about your severe crash. And NO, I don’t get the “system” at all. I have asked for IVIG and been denied. It might or might not help but it would be worth trying. I have a few months in spring and summer to garden, but confined to my deck. This is my annual exercise and I will be doing great even able to walk the dog. I feel great then one day I get out of bed unable to stand. This happened 10 days ago. This has become the pattern For a few years. Two yrs ago when the weather cooled I began collapsing. On a sofa or bed. I can’t get up and I pass out. I begin twitching and have lifelike dreams I act/speak out. I keep trying to wake myself up, I may raise up only to collapse again. I pass out but remember everything, I just can’t move or function. I have no idea how long this lasts. No doctor has seemed interested and the neuro attributes everything to ME/CFS. But strange as that sounds, I have gone on to experience episodes of sleepiness. I cannot keep my eyes open, which is embarrassing during conversations. Doc said this is not sleep apnea. But not I have learned what to expect and my very supportive husband has finally fully retired so he will be around if these episodess return. I pray for your recovery from this severe episode.

 

[Bufeyberry]

Thank you so much. That’s terrible, maybe your husband can record it. Then you could show it to your Dr. I saw a video posted by a lady on one of my FB groups. Her husband recorded her. It really sounds like you need an EMG and nerve conduction studies done. If they haven’t done them, I’d push for it. Also, if your neurologist isn’t that familiar with neuromuscular disorders, I’d see one who is. I have been receiving IVIG regularly since 2015/16 for CIDP. Can’t keep the dates straight now. Now that I’m this bad I can’t do them. I’ve tried a couple thing for my rheumatoid issues as well, but nothing ever helped. Good luck and prayers to you.

 

[GrammaLinda]

This is more a reply to everyone here. When stopping Valacyclovir, is it recommended to taper off? I had Ramsey Hunt Syndrome complete with terrible ear lesions and all. When we started Valacyclovir it took many months to get it under control. No sooner than lesions we’re starting to heal, more we’re constantly breaking out. Every two weeks (plus or minus) it was like a viral attack. I’d feel severe body aches and have a a fever, sometimes low grade, and sometimes over 101+. It was like I could feel the VZV moving around my body and I’d have areas far away from the ear/neck/face areas start to itch and burn. Sometimes lesions would pop up in these distant areas, but not as intense as the ones in the trigeminal region. Then it felt as though it made its way back “home” to that cozy area it prefers. The final landing back to that same area brought lesions on back of neck, some in scalp, left side of my face/ear/forehead/chin/eye. This has been going on for well over 2 yrs. I would have to look back at my medical history on my portal for the exact dates, but something around that amount of time. I suffered with severe PMS/PMDD for a long time, and I’m 52 now, and it’s starting to wax and wane. I do know that for women, VZV and other type viruses, can be greatly impacted by our monthly cycles. Anyway I had trigeminal neuralgia at the start of this as well. I’ve been taking 1 gram of Valacyclovir per day, since it started. I’ve read conflicting reports on this medication, especially when taken long term. My PCP has been firm, that going over 1gram is not a good idea, and wouldn’t have a big impact. He said only when it’s first hitting could I double the dosage for no more than a week. I never have done this. I feel distinctly that at best the valacyclovir is just keeping it beat back and sort of at bay. I’m very in tune with my body and I really feel like I need to at least stop the valacyclovir for a while. I’d love to know if tapering has been beneficial for anyone, opposed to stopping valacyclovir cold Turkey. My level of ME is very severe and we are trying to control symptoms and get my IVIG infusions for my CIDP set back up at home. My neurologist is wonderful with her neuromuscular subspecialties, but she has never treated a patient with ME and CIDP. CIDP is chronic inflammatory demyelinating polyneuropathy. It is best described as the chronic counterpart of Guillane Barre. I’ve had it since an acute onset in 2015, but it wasn’t correctly diagnosed until 2016, about 6 or 7 months after onset. Currently the trigeminal areas mentioned still feel tingly, itchy, hot, painful, and like it’s trying to form lesions, but they present way less severely than they were. Maybe I’m making a mistake by stopping the valacyclovir, but it’s just something that I feel I need to try. My baseline dove after all of this and having Covid. I was already homebound and bedridden other than still being able to tolerate laying in the couch some. Now I’m completely bedridden, other than toileting with difficulty. Other than PEM, my most troublesome symptom is unimaginably severe, widespread pain. Also gastrointestinal issues that wax and wane. Some days I’m starving and can’t get enough to eat and some days I’m not able to eat at all. My most dramatic weight loss was during all the viral hits. I lost over 40 lbs, but thankfully I could afford to. I’ve gained about 10 back, and if I can continue to be able to tolerate food, hopefully I won’t progress at least as far as that part goes. I’ve been sick for so long, that I am accustomed to handling life from my bed. It happened so gradually over such a long period of time, that I think I acclimated to it. I miss my life of course, but I could “tolerate” all of these things better, if I could get the pain under control. That’s the absolute worst part of this in many ways. I don’t think it’s at all possible for my body to have any chance at any type recovery when I’m writhing in constant pain. I often wonder what makes some patients feel this terribly debilitating pain, and others not. Like what exactly is causing the severe pain part of this illness, I just don’t understand that part of it at all. I hope everyone is getting by as best they can and I’m so thankful to have this informative group.

Thank you so much. That’s terrible, maybe your husband can record it. Then you could show it to your Dr. I saw a video posted by a lady on one of my FB groups. Her husband recorded her. It really sounds like you need an EMG and nerve conduction studies done. If they haven’t done them, I’d push for it. Also, if your neurologist isn’t that familiar with neuromuscular disorders, I’d see one who is. I have been receiving IVIG regularly since 2015/16 for CIDP. Can’t keep the dates straight now. Now that I’m this bad I can’t do them. I’ve tried a couple thing for my rheumatoid issues as well, but nothing ever helped. Good luck and prayers to you.

In past years I had these studies. Disproved MS when they didn’t credit me/CFS/fibro. At this point I am finished with doctors. The best neuro I had put me on LDN but I could tell no difference. I can only do so much and no longer have energy to fight. I will be 76 in October and most days I am good at managing. Thankful I have a full time loving and caring husband. Happily burning my bridges, so to speak and work at having the best life possible, considering.

 

[TAllen]

Just an add on to what everyone has said. I have been in remission (no such thing as cure, yet) from possible Lyme/ ANA, ME/CFS, MCAS and a possible CSF leak at about 80% normal after 8 years of hell. Except for 2 weeks of Doxy in 2016 after the tick bite that gave me Lyme/ANA in 2015, I have taken NO commercial drugs. I've done it all with herbs, supplements, and a healthy diet. More and more research shows the harm that all drugs, not just antibiotics, do to the microbiome of the gut. Research shows the gut is in direct contact with the brain and without a healthy gut you can't fight off the diseases and conditions that plague us.

8 Surprising Things That Harm Your Gut Bacteria

Having healthy gut bacteria is important for your health. However, many diet, lifestyle and other factors can negatively affect the health of your gut.

www.healthline.com

Preservatives harmful to human gut, Maui study finds | University of Hawaiʻi System News

Food preservatives may be harmful to beneficial bacteria in the human body, according to a study at University of Hawaii Maui College.

www.hawaii.edu

The Impact of Food Additives on the Abundance and Composition of Gut Microbiota

The gut microbiota has been confirmed as an important part in human health, and is even take as an ‘organ’. The interaction between the gut microbiota and host intestinal environment plays a key role in digestion, metabolism, immunity, ...

www.ncbi.nlm.nih.gov

Here's a list of a few of the websites that I trust and provide factual information on healing from these issues. These are the ones I used and still use to get and stay better. (Someday maybe I can say well!) Google anything I say below for more details but be careful there are way to many quacks out there praying on sick people!

#1 Dr Marty Ross, MD He started with Lyme but covers all the basics that MUST be achieved to heal, including, sleep, exercise, diet and then using herbal and drugs if necessary. He does an awesome call in webinar online to answer questions almost every week. His info helped me immensely initially and I still learn things every week as we move through Covid. https://www.treatlyme.net/ When & How to Treat Chronic Viruses: A Brief Guide. https://www.treatlyme.net/guide/kills-viruses-a-brief-guide

#2 ALWAYS check for drug interactions very carefully before using any herb, supplement (even vitamins and minerals!) and new drug!! 99% of Drs don't know about all meds you are taking and know nothing about herbs! https://www.drugs.com/

#3 https://medicinalherbals.net/best-antiviral-herbs/#comments

#4 Two lesser known herbs that have worked for me are
a. Cistus (Cistus incanus) https://botanicalinstitute.org/cistus/ Tested mostly for Flu and respiratory issues but seems to help suppress my EBV and other viruses.

b. Lomatium (Lomatium dissectum) Works very well for me but can have severe side effects in some people. You MUST do careful reading and research before using! I have used Barlow Herbal Lomatium from the beginning. https://barlowherbal.com/blogs/blog/lomatium-dissectum-detox-rash-information

#5 An example of the research being done on natural alternatives to drugs in control of viruses. Many herbs, including green, black and cistus tea help control the flu virus but less is known about the effects on other herpes viruses. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8147851/

#6 CBD is your friend. Besides being a very good pain reliever, relieving inflammation and helping ease the anxiety of having a chronic illness, CBD has a multitude of research proven, benefits to health. https://www.washingtonpost.com/news...harma-companies-are-fighting-legal-marijuana/ Full spectrum CBD is what you want, for the most part. It has only .03 THC so unless you are taking a lot of it it won't show on a drug test. Besides which THC is an even better pain killer. I use tinctures (oil not alcohol due to MCAS) so I can titrate the drops to the exact amount I need. There are headaches that require a couple drops of THC to be added to the CBD for relief. I survived meningitis (when the VA refused to treat me) by taking a lot of CBD/THC for 5 days while the 102.0 fever killed the bugs. I never was "high".

I take curcumin, quercetin, cordyceps, cistus tea and a mushroom complex daily. After taking handfuls of supplements for several years, I am now well enough to rotate through a lot of other anti-viral/bacterial/fungal herbs and supplements on an as needed basis, depending on how I feel and the season of the year. For example: Flu season /winter, I increase my Vit D3 to 2000iu a day and add/ rotating; echinacea, resveratrol, cat's claw, olive leaf, lomatium, as needed. In the Spring my dog and I start Andrographis to help stop tick borne diseases. (If I do find a tick on on of us, I add Otoba bark to the Cat's Claw and we take it for at least 2 weeks. Andro doesn't cure Lyme (in the lab) but it seems to stop it's transmission somehow. After 100's of tick bites my dog came back with a positive Anaplasma test at 10yo but has never shown any symptoms. It's worked great so far!).

I also highly recommend getting a genetic profile done if possible. I used Genomic Insight through my Dr. I found out that I am genetically prone to histamine issues and do have some methylation issues. Once I changed my source of Vit B12/folate things got better. That and a strict "No processed food" diet has helped my gut function improve from good to great. Preservatives in food have been proven to kill gut microbes as well. All of these little things prevent your body from being able to suppress/remove disease pathogens on it's own. This is a long process as you all know. Took me 4 years to beat Lyme(Cat's Claw Otoba every day), 2 years to figure out the ME/CFS (high dose B1/B2 and amino acids), 2 years MCAS (low histamine diet and DAO). Now onto the CSF leak! Everyone is different and you need to do what's best for you but if you are taking anti-viral drugs right now you need to research your chance of full recovery compared to the possibly irreparable harm you are doing to your body. I some circumstances you have no choice and I pray for us all that there will be a breakthrough in research so we all can recover. In the meantime, your job is to research and try and heal yourself. Share your info with others so they can heal faster. Try new things if you able, based on research but do it very carefully! God bless you all!