Considering Antivirals - Seeking Advice

k07 said...
I would give antivirals a try. I felt much more comfortable with them than abx. I tried famvir, acyclovir, valtrex. It seemed I bruised easier on valtrex, but that was my only side effect. Of the three, I felt the famvir did help my fatigue. But I did stay on that one the longest (6 months).

Thank you, k07. I ended up getting an Rx for an antiviral that I may begin on Monday. I was also prescribed an NSAID, but I'm not keen on those, due to concerns about my stomach. Fortunately, I don't have any pain, but these two medications were the same ones used in a ME/CFS clinical trial.

k07 said...
I wanted to mention to you that there is a well known biological dentist who will look at a panorex scan (if u had one recently from dentist) for free and give you a treatment plan if he sees something suspicious. You just email their office. He was featured in the link below. It seems a lot of your health issues started with dental stuff and military.

https://www.betterhealthguy.com/episode51

That's a pretty amazing service for them to offer. I wasn't aware, so thank you very much. My current dentist is also a biological dentist and a fellow of the IAOMT. But, a second opinion -- especially when free -- never hurt anyone.

k07 said...
I think WBF’s suggestions are awesome. Hope you can make a decision soon and that it will result in further healing!

Agreed about WalkingByFaith's suggestions. I'm going to call that Environmental Medicine clinic this upcoming week and have a conversation with them. Maybe they can offer a case evaluation to see if I might be a good match, before spending the time, money, and effort to go see them.

I appreciate your well wishes, too, as always! I send you and your family by best, in return! How are you guys doing in your new home state? Do you like it? Miss your previous home?

1000Daisies said...
Dude, you know I care! My posts to you have come from the heart!
I have posted a bit of a tough love posts to you previously about you not doing anything. I didn't get a response from my last one. So, I'm reluctant to post here again. But know, again, this is from the heart, and I'm going to try again!

My Dear Daisies. Indeed, I do feel you care and I know your posts are from the heart. I feel we have a lot in common, in that regard. I give some "tough love" to others, too. But, in your case, your posts never feel "tough." So, I appreciate your investing the time in me. You should never feel reluctant to write, though, for fear of troubling me. I did lapse in responding to your previous post, but it wasn't intentional. I'm sorry for letting that slip. I did read it, though. I never subscribe to posts, so I have to rely on memory for which threads to go back and check.

1000Daisies said...
I truly hope you try something. I've said this before, but I understand a LOT of what you are going through and your negativity towards treatments. I also understand analysis paralysis. But I really wish you would work past these issues - and please, try something! Take a step!

For this reason, I think a clinic would be good for you. I feel you have lost your way for quite some time now. A clinic may help you get back on track. At least it's worth a try.

One of the things I've wanted all along is a doctor or clinic to give me a treatment plan, so I could stop thinking about it and just follow directions. I'm really good about following a plan. The trick is having the right plan. And, to have the right plan, you first have to find the right doctor or clinic. Herein lies the problem. You know there's a lot of sham doctors and questionable clinics that sell expensive and unproven procedures and remedies. If I were wealthy, I'd buy a motorhome and travel around the country to clinics like Biologix (formerly Hansa), Dr.J in Washington, DC; Dr. H. in upstate NY; etc. I also feel I've lost my way...though I'm not sure I ever had anything figured out in the first place.

1000Daisies said...
I can relate. I felt like I lost my way for one of my kids. I feel I had a lot of the bits and pieces, but I just couldn't seem to put it all together. My son is more complicated in that it isn't as simple as giving him anti-bacterials/anti-virals/anti-whatever. Something is off in his body.

We recently went to a clinic, and we are slowly finding our way again. I am very cautiously optimistic. Before the clinic, I couldn't get him out of bed. Now, several weeks later, he is out of bed, semi-functioning, and a lot of his symptoms are greatly reduced. Don't get me wrong - he is STILL far from well, but the improvement in such a relatively short amount of time is very promising. His clinic/doctor is really good about connecting the dots.

I wish the same for you. Whether it's a clinic or not, I want you to find your path.

That's really encouraging and inspiring about your son! I hope he continues to improve rapidly and is able to become 150% better. Thank you, too, for the similar wishes in return. Are you able to share anything about the clinic? If not, I understand. It may be too soon or you many not want to jinx anything.

1000Daisies said...
Trust me - I understand about cost being a serious issue. I won't even begin to tell you hard that has been for me to send my child to an expensive clinic.
However, with no income/job for you, I assume you have retirement savings. If so, I'd consider taking an early withdrawal, take the penalty (10%?), but the taxes you would have to pay would so minimal considering you have no income - so the penalty may not be so bad. Normally, I would never advise taking out of retirement, but sometimes, in certain situations like this, it wouldn't be a bad idea if it meant you could get your health back and if it was your only option. Your health is worth the investment!

Believe me, if I had a 100% assurance that a particular doctor, clinic, or protocol would definitely resolve my issues, I'd have spent the money a couple of years ago. Though my emergency savings is coming to an end, I do have a little money in a retirement account. You make a good point about the low tax, since my only "income" would be what I would withdraw. Plus, of course, the 10% penalty. If I were younger, this might be more of an appealing offer. But, given my age, tapping those funds will have to be out of an absolute necessity. As in: I'd have to be in imminent risk of being tossed out on the street. Hopefully, it won't come to that. I have at least three friends (in different states) that would offer me temporary housing. Worst case, I might have to rotate a couple of months at each, so I don't wear out my welcome any more than necessary. I better learn to cook...or, recover enough to do chores for them.

1000Daisies said...
Dude, always sending {{{HUGS}}} your way!

Right back at you, doll face! xoxo

Sheekster said...
Dude - Could you give us a concentrated list of every symptom you have? Symptoms can often be a good guide to your issues and then treatment of those issues. I have found my babesia symptoms match up exactly with what is published about babesia online. This would give us another good starting point to give advice.

Sheekster: Thanks for reading my post and offering to help. Things have been up-and-down, lately, so I got behind on e-mails and replying to all the nice folks like you on this forum. I apologize for the delay.

Here are some of the things that affect me. Not all of them have started since my most recent onset/return of fatigue in 2013 or my tick bite in 2014. Some go back over 15 years and others go back over 30 years. Not everything on the list bothers me every moment of every day, of course. But, over the span of a few days, most will affect me. By the end of a month's time, however, I'll have experienced all of them.

- Fatigue
- Waking tired / not refreshed
- Poor short-term memory
- Brain fog / trouble finding words
- Sneezing makes me lightheaded
- Cold hands/feet
- Pulse sometimes feels slow/weak
- Nose often runs when eating or drinking anything (whether hot or cold, spicy or bland)
- Sore throat (in FRONT of throat, around cartilage)
- Voice raspy, cuts-out
- Thinning of outer 1/3 of eyebrows
- Dizziness
- Motion issues/sickness
- Breathlessness when standing for more than about 10 minutes
- When talking a lot, can run out of breath and feel faint/dizzy
- Can no longer hold my breath for very long (feel oxygen-deprived, start to gasp for air)
- Often feel my brain and eyes cannot agree where I am in space (X, Y, and Z coordinates)
- Closing eyes and moving head can make me feel off-balance
- Headaches
- Migraines (lose vision)
- Muscle wasting/loss
- Exercise intolerance
- Easily startled
- Anxiety
- Heart palpitations
- Tinnitus
- Sensory overload at times (auditory, visual)
- Digestive/GI issues (occasional acid, reflux, indigestion)
- Depression
- Anhedonia

UPDATE: Thanks to sandyfeet for sharing a link (in a thread I started about "Adrenal Fatigue") to SelfHacked.com, I found and copied these additional symptoms I have:

- Irritability
- Inability to concentrate
- Poor working memory and executive function
- Poor ability to memorize things
- Impaired ability to process new information and delayed processing
- Low motivation
- Wandering thoughts; inability to sustain a train of thought
- Disorientation
- Having trouble getting up in the morning
- Crave salty and/or sweet snacks (I'm a salt addict. I'd salt fish from the Dead Sea.)
- Struggling to keep up with life’s daily demands
- Not having fun anymore
- Decreased sex drive
- Hopelessness and despair
- Trouble thinking clearly or finishing tasks
- Restless legs
- Circadian rhythm issues – tired in the day, awake at night
- Suppressed appetite

I've omitted a couple of conditions, such as longitudinal ridges on nails, that are probably not linked to my fatigue or tick bite. If I looked up a list of Lyme and Co-Infection symptoms, I might find that I have others.

Fortunately, some of my other symptoms have resolved, such as migrating aches and pains in my joints and muscles, tremors, and eye twitches. I also had a cough that lasted for several months and would keep relapsing from time-to-time for more than a year.

_

Post Edited (The Dude Abides) : 5/5/2019 6:56:54 AM (GMT-6)

Hi, Dahlias. I'm in the southeast part of the country -- nearer to Virginia than, say, California. What's happening in Virginia?

I've been in my current apartment the entire time. In fact, I was here a couple of years prior to becoming sick. Then, I got sick. A couple of years later, the leaks occurred. My health has been up-and-down, both before and after the leaks, so I can't say that I've noticed any definitive correlation. However, I definitely do not rule it out as a possibility. This is my fourth (possibly fifth) relapse of fatigue in the past 15+ years. During this time, I've lived in different cities, states, and apartments/homes.

Thank you for the well wishes. I also wish healing, health, and happiness to you, along with everyone else struggling in this world.

Dude,

I was just about to bring up MOLD again, as I remembered you had a water incident in the past. I just read through your posts from today and saw you mentioned that again. I can tell you that from your symptom list, it definitely sounds like mold is a factor.

The good news is the doctor at that environmental clinic has treated many patients with mold illness. He does not use the Shoemaker protocol (as far as I know) but has likely been treating mold illness long before Shoemaker started his work on CIRS.

PLEASE be sure to include that information when you engage with them, as it is a vital piece that will need to be addressed.

Also, I have seen Dr AL listed on the Paradigm Change site as a doctor that mold patients found helpful.

Wishing you all the best and will pray you get the right help that you need

Dude,

You mentioned health insurance running out. If it were me, I would try all I could to an appointment with the doctor and get lab testing done before my insurance ran out, assuming your insurance covers lab testing.

Do you not have Tricare?

I just learned from my doctor that Blue Cross now covers Great Plains Laboratories, at least some of the plans do. List of Blue Cross plans: https://
https://static1.squarespace.com/static/560ac814e4b067a33438ecea/t/565f33ade4b04f2eafe53083/1449079725101/bluecrossblueshield.pdf

Medicaire, Medicaid, and Tricare also cover some of the Great Plains tests. Coverage may depend on the specific tests.

Great Plains has a mycotoxin test (mold). My doctor said it’s better than the Realtime Labs tests, as it tests for more stuff. Medicaid and Tricare also cover Realtime Labs mycotoxin test.

Post Edited (WalkingbyFaith) : 5/5/2019 8:52:54 AM (GMT-6)

WalkingbyFaith said...
I was just about to bring up MOLD again, as I remembered you had a water incident in the past. I just read through your posts from today and saw you mentioned that again. I can tell you that from your symptom list, it definitely sounds like mold is a factor.

The good news is the doctor at that environmental clinic has treated many patients with mold illness. He does not use the Shoemaker protocol (as far as I know) but has likely been treating mold illness long before Shoemaker started his work on CIRS.

PLEASE be sure to include that information when you engage with them, as it is a vital piece that will need to be addressed.

Also, I have seen Dr AL listed on the Paradigm Change site as a doctor that mold patients found helpful.

Wishing you all the best and will pray you get the right help that you need

Thank you. I'll definitely mention the water leak, though I worry about such a doctor jumping to conclusions too quickly.

You know how it goes, sometimes. If I have muscle aches and I'm really tired, a Lyme doctor will say I have Lyme. A Fibromyalgia doctor will say I have Fibromyalgia. And, a Chronic Fatigue Syndrome doctor will say I have Chronic Fatigue Syndrome. But, I like the fact he's an older gentleman, because he's been around the block a few times. Of course, that's its own double-edged sword, as some older doctors don't like to advance their knowledge.

Okay, I'm going to stop thinking about it and just call them this upcoming week.

k07 said...
Dude - I'm missing the nice weather and beautiful skies of my former state. And also how friendly everyone was! It really is a beautiful state. It's hard to believe 2 years have passed since we moved. I am slightly better, so that's a plus. Most of that improvement happened after getting rid of our mattress which I was allergic or something. I can't figure out the root cause of my allergies, chemical sensitivities. I'm on a waiting list for a Klinghardt/Shoemaker trained doc in Georgia so fingers crossed he is able to figure it out. I've been saving up by not really treating in the last 18 months (I've done LDI and genetics supplements). I'm not worse, which makes me doubt that lyme disease is a top issue.

As for the dentist, I also sent my xray to him. I don't think I have any cavitation issues, but hey, his opinion would be good. I know they offer the service in hopes that you travel there. Which maybe I would if my new doctor thought it was a primary player.

I wonder if you should ask your current doctor to run some of the Shoemaker labs while you have coverage?
https://www.survivingmold.com/docs/physicians_order_sheet_02112016.pdf

Which antiviral are you trying? I am looking forward to hearing your progress. I think you are moving in the right direction!

Indeed, your former home state is beautiful -- especially that side of it. And, the people are really terrific. I'm jaded about the south, though, since I was born and raised there. Since then, I've lived north, south, east, and west.

I'm glad you're doing better and also can't believe it's been two years. Then again, it's been 16 months, since I resigned from my job, so I guess it shouldn't be that surprising how fast the time passed.

Did you know your mattress was a problem -- or, likely a problem -- before getting rid of it? Or, did you determine that after the fact? I have a memory foam pillow that reeked of chemicals when I opened the package in which it was shipped. I had to put it in another room and let it off-gas for several days. Even then, it still stunk, albeit less so. I also have a bed that has a layer of memory foam under the pillow-top mattress and other foam around the perimeter of the bed. The bed had to off-gas for a few days, too. The bed is now just over 10 years old. The pillow is probably four or five years old. Lately, I've been thinking about how funky the pillow must be, after wicking moisture and likely collecting microscopic critters, dust, and who-knows-what else. Blech. I should probably buy a new pillow -- a "regular" one that's not allergenic or full of chemicals. Assuming such a product exists...and won't require me selling a kidney to afford it.

Thank you for the list of lab tests. I'm holding off on any further tests for the moment, unless I have either an obvious or urgent need for something...or, I have a hotshot chronic illness doctor that can convince me of the benefit. If you take a peek at the end of my last note to WalkingByFaith, you'll see how I just got burned by a lab. I never mind spending money, provided I get value in exchange. Going forward, I'll be asking tougher questions about such things.

Like you, I got a prescription for Famvir. The capsules are 250 mg each and I'm to take one tablet twice daily. He figured it would be better to try to keep a relatively steady blood level of the medicine, versus taking a single bolus.

Would you be open to a discussion via e-mail? I'd like to discuss something with you that might necessitate me sending you some attachments. It's not something I'd be able to put on Dropbox and share in an open forum. If so, I can enable my e-mail, so you can keep yours private. If not, I'll certainly understand and respect your privacy.

Either way, I appreciate your encouragement and ongoing willingness to share your feedback and ideas! I've been overwhelmed by all the wonderful people offering so much great support!

Sincerely,
His Dudeness

Clam Digger said...
Hi Dude,
I noticed “thinning of outer 1/3 eyebrows” on your list of systems. I think that I read that this is a symptom of Vitamin A toxicity (per an engineer/scientist from Canada). He believes many auto-immune system disorders are caused by Vitamin A toxicity. He said he cleared up his own eczema/psoriasis by going on a strict diet of foods with zero Vitamin A (mainly beef, rice and black beans). His blog is https://ggenereux.blog. It might be worth a read. Clam Digger.

Hi, Clam Digger:

Thanks for the note. Funny enough, I posted about Grant on this forum, back in May 2018. But, the topic barely garnered any interest.

I didn't realize that the thinning of the outer 1/3 of the eyebrows might be due to Vitamin A. Classically, it's been attributed to thyroid issues, along with low basal temperature (Broda Barnes), and cold hands/feet. However, I've repeatedly had my thyroid tested forward, backward, and upside down. Each time, I'm told everything is "Normal."

If you're sufficiently interested, Dr. Garrett Smith has documented quite a bit about Vitamin A on his Blog-Forum. He's even developed a "Vitamin A Depletion" diet that some of his patients have used and reported good results. Other folks -- non-patients -- have been trying a low-/no-Vitamin A diet, too, simply by searching Google to determine which foods are high/low in Vitamin A.

Personally, I don't eat a lot of foods high in Vitamin A. In fact, it was Grant's work that helped convince me to stop supplementing daily with a multi-vitamin/-mineral. For many months, I stopped all supplements, except for two sleep supplements. Later, I went down to just one sleep supplement with no ill effect. Lately, I've been taking infrequent, half-doses of a multi-vitamin/-mineral from the company MegaFood. Rather than two tablets daily, as suggested on the bottle, I might take one capsule once or twice per week, depending on what's going on.

One final note on Dr. Garrett Smith and Vitamin A, I read a comment on a blog that stated Dr. Smith found some interesting studies about retinoid levels observed in liver biopsies. Allegedly, some 60-ish percent of biopsies showed very high retinoid levels -- beyond the level believed to be toxic. There was no link to the information on Dr. Smith's Blog-Forum and I haven't yet felt the interest to go searching for it or e-mail Dr. Smith. I'm interested to see where this topic leads, over the coming years.

Best wishes,
Dude