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Much More Tired. Could It be Immune Boosters/Herbs

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Posted 2/15/2020 1:23 PM (GMT -5)
In short, I recently added in Astragalus, Ashwagandha, Reshi and Turmeric. Also adding in more monolaurin.

Could that cause the worsening of fatigue and depression? Hardly getting through days again. Like a herx? I've read Astragalus might cause it. Thanks.
Posted 2/15/2020 1:32 PM (GMT -5)
I have heard that about Astragalus as well, someone I know who owns a health store told me that it can lock in all the bad stuff as well as cause your immune system to overwork. Maybe drop that and see if you feel better. Good luck
Posted 2/15/2020 2:17 PM (GMT -5)
Sounds like the astragalus is most likely? The reishi takes a long time to have any effect and turmeric wouldn’t do it.

Have you considered Valtrex for the EBV? If you could get a prescription that is...
Posted 2/15/2020 2:26 PM (GMT -5)
Buhner has talked about Astragalus causing an autoimmune like reaction.

Here’s a thread on it:

https://www.healingwell.com/community/default.aspx?f=30&m=4033994
Posted 2/15/2020 3:19 PM (GMT -5)
HeartsnPain - Good idea to stop it and see if anything improves. Sometimes I get caught up in trying to correct things NOW, instead of using logic. And logic left the building with me early on with this.

dcd - I wanted to take Valtrex, but, once again, the kidney situation will not allow it. As mentioned in another post, if it weren't for kidneys, there is so much more I could try. Of all the things going on, the kidneys are biggest problem that create anxiety.

Girlie - Thanks for the link. I read it and see where Buhner thinks it can over-activate immune system. But I wonder if it can cause fatigue and more fever, which could be autoimmune, or is it simply a herx from more killing off bacteria?
Posted 2/15/2020 3:21 PM (GMT -5)
Ashwagandha is an adaptogen, so people's response to it will vary widely. Many find it very helpful, but as with any adaptogen, it's a good idea to start slowly and at a low dose. For every person it gives energy, it will make someone else tired. For every person it chills out, it will make someone else anxious. So that's another idea, if the astragalus turns out not to be the issue.
Posted 2/15/2020 4:00 PM (GMT -5)
I remember reading on the Buhner Healing Lyme website something about Astragalus being contraindicated for people with chronic lyme...

http://buhnerhealinglyme.com/herbs/astragalus-for-lyme/

Not sure why, as I haven't read the books (he says he talks more in depth in 2nd edition of Healing Lyme)... just did some of the protocol based on the website info, anyway for this reason I avoided astragalus while I was treating since I have late stage neuroborreliosis.

So maybe consider discontinuing the use of astragalus.

Also wanted to say to you running wild, regarding another post, was thinking about how you were feeling hopeless, and having dark rumination, I think we've all been there, sometimes as they say, it is darkest before dawn, so hopefully there are some bright times ahead. I've had some ups and downs, to put it mildly, like within the same few days.

And this forum and its members have shown me some things like Holy Basil (thanks to astroman) and Lithium Orotate 5mg (thanks to Dr. R's webinars and website treatlyme.net) These I just started taking that seem to have blunted some of my neuropsychiatric manifestations sorta like they're on mute or like they're calmly set into the background noise. So I don't know if it will help but maybe you can try Holy Basil and Lithium Orotate?

And I don't know if you feel well enough to travel but maybe you could take a vacation retreat somewhere like a medical spa or luxury hotel? since you say money is not a problem?
Posted 2/15/2020 5:35 PM (GMT -5)
Thanks for you posts, saraeli and borreliob. The information concerning astragalus and ashwagandha is typical of, it seems, what we all deal with Lyme and other problems it can create. A lot of "could" and "might" seem to be so common in all we try.

Was hoping astragalus and ashwagandha would help as they are both supposed to be good for kidney problems and EBV. One Lyme expert says one thing and another contradicts it. Trial and error (always hope for not error).

Don't know if it is coincidence late day fever is back and higher/longer than before. That and fatigue. What to ponder is if it is coincidence, autoimmune, EBV or a herx. We all deal with questions with Lyme and the best way to individually treat.

Just for information purposes for those with similar situations or close to similar, the most reliable (based on studies) blood test for autoimmune diseases is the Avise test. Just had that test performed and ALL was negative except C3, which was low but higher than a month ago and C4 was 16, with 13 being low and 82 being high. Yet I have vitiligo and other autoimmune symptoms. Only one of 6 multiple autoimmune test had anything else close to positive, with an ANA at 1:60.

With kidney issues in play, they are finally going to do a kidney biopsy on Thursday, which, supposedly, can give a strong idea of what is going on with kidneys, including if it is autoimmune related. And I am also about to be scheduled to see a doctor who is considered one of the top, if not the top, US doctor for body fat loss (I have lost only fat all over body throughout this process, and I know of at least 5 others on this site going through same situation.

Eliminating is just as important as identifying problems, or at least I believe that.

I tried Holy Basil before, and it was strange because it created an inner anxiety rather than calming. Have not looked into Lithium Orotate but will do so tonight. And borreliob - thanks for your words and ideas. Also, hope I didn't come off as sounding like I have more money than I need. Wish I did, but even if that were the case, it would do no good with health as it is. What I should have written is spending money for an answer to this is paramount to anything else, and I'll spend more than I want to in an effort to find health.

A vacation for us all would be nice. It's weird, but I'm most calm at my house and get uncomfortable when I'm out somewhere. Complete opposite of my true nature. Anyone else feel that?
Posted 2/15/2020 6:30 PM (GMT -5)
It makes a lot of sense to feel best at home, where we can control the variables! I miss being out in the world more, but I too feel most comfortable at home. The idea of travel, even to somewhere lovely, sounds stressful these days.

Holy basil made me an anxious mess. But of course others find it very helpful!

RW, so glad you are having the kidney biopsy and found a promising specialist. I know kidney concerns are such a road block for you. This illness is complex enough without throwing in further limitations to what you can try to fix it! I hope that more information about the nature of the issues will be helpful!

I know you have posted about the fevers in the past, but you mentioned they improved with monolaurin recently, if I am remembering correctly. What is your temperature like throughout the day? Do you always measure it in the same way, same circumstances, etc.? It's normal for temperatures to increase throughout the day, so mostly I'm asking what level of fluctuation should be a cause for concern, since mine is always somewhat higher int he afternoon and evening. Which symptoms flare with the fever, if any?
Posted 2/15/2020 6:42 PM (GMT -5)
RunningWild,

This is so bizarre because the girl I mentioned who had the kidney problems possibly related to EBV got fevers nonstop.

She claims to have gotten a fever in late December and has been sick with recurring fevers colds and flus and sinus infections ever since. And this has been a recurring cycle for her years. You guys are both very similar w the fevers and the kidney issues. Wish I knew what it means. How’s your immune system is your WBC low? NK cells normal? Have you ever had your immunoglobulin levels checked, are they normal? Talking out of my butt but just wondering if there’s any sign your immune system is depressed. Really curious about the Ig levels.

Possible EBV keeps re-emerging and causing flu and kidney problems. Maybe also check out CVID (why I mentioned immunoglobulin levels). People w it tend to get sick a lot and to develop a lot of autoimmune diseases. Just spitballing here tho this is above my pay grade

Keep us posted on everything w your specialists and glad you’ve got some people looking into this

Post Edited (dcd2103) : 2/15/2020 4:51:53 PM (GMT-7)

Posted 2/15/2020 8:36 PM (GMT -5)
saraeli - At least your memory is good remembering about the monolaurin. It got better for about 5 days where I was at about 50%. The fever stayed away, for the most part, for about a month. Now back with fatigue. The temperature can get to 98.8 to 99.4, but when it does I feel I can hardly hold my head up. Always evenings, and I can feel it coming. It just seems like a process with a pattern. My normal temp is usually 98.2 or less.

How high does your temperature go and do you feel fatigue with it? What would you say are your worst symptoms?

dcd - Good questions and sorry to know your friend has same type thing going. All my immuglobulin tests are normal, which surprised me. Have had them done three times in a 5 month span. White cells are usually normal bottom but have gotten as low as 2.5. They do not go up much past low normal. I don't know about NK cells. Would that be on a test with all the others? Have had so many they blur together, but almost everything is normal.

Talking out of our butts is better than what the doctors seem to do. From your thought-provoking posts, I would call it brain stroming. But then again, my brains may be in my butt, at this point. I like that you look at so many angles. I find it vital to do in an effort to try and get well. I'm just worn with trying right now.

I found the doctor in Dallas. Doctors I've seen just say "you have idopathic lipodystrophy," which I don't. Lipodystrophy causes fat loss in some areas and redistribution of fat lumps in other areas. What is happening with me is lipoatrophy. But even then they don't mention it again because they are clueless. Same thing happened at Mayo Clinic. They even had medical students look at me (this was in 2014) like I was a freak. I told them I'm not doing this and left. Not in anger, but matter of factly.

As far as the girl you mention, I hope she finds an answer, and if I do, will share it.
Posted 2/15/2020 9:11 PM (GMT -5)
I always thought that it was normal for body temperature to vary throughout the day, increasing up to a full degree by late afternoon. Mine definitely does. I'm reliably 97.2 in the morning and 98.2 in the evening, sometimes slightly higher if I am menstruating or lying down (less air movement cooling me if I'm lying down). I am more tired in the evening, but that seems normal to me. If I have a crash at some point in the afternoon, I usually can attribute it to something I ate (high in histamine, sugar, etc.) or mild dehydration. I trust you, though, that what is going on with you could be significant. I have never thought of my own temperature fluctuations as significant, but maybe it's an angle to explore!
Posted 2/15/2020 9:20 PM (GMT -5)
Monolaurin will definitely make you herx/tired.
Posted 2/16/2020 12:18 PM (GMT -5)
"Mine definitely does. I'm reliably 97.2 in the morning and 98.2 in the evening."

saraeli - That is similar to what mine used to do, except it was more like 97.8 - 98.2. Now normal is closer to 97.9 - 98.4. But now at night it goes as high as 99.4. That's when everything feels off. It's a good point about the fluctuations we see in body temperature, and when I wasn't feeling as bad in evening, it didn't get that high.

As mentioned above, it's just a question of what is driving it. My guess is EBV but the kidney biopsy may tell a different story. Also wondering if you feel worse if you eat certain foods.

elvin - I've upped monolaurin slowly. Recently, however, I raised it by about 20%. Again, not sure if that is reason for change, but cutting back might tell a story. Are you taking monolaurin or have you before?
Posted 2/16/2020 12:30 PM (GMT -5)
RW: Yes, eating high-histamine foods and sugar will make me exhausted, floored by brain fog, heavy, etc. I have to be very strict about those things. And yes, always a good idea to look at the data our bodies provide and see what might be a useful clue!

Definitely update us on your kidney appointments!
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