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Posted 1/23/2024 9:18 PM (GMT 0)
Hi! I’m new here - and have been pouring over your posts.

I fell ill about 10 days after being eaten alive by mosquitos in suburban Detroit back in 2012. I got sick with a headache on Tuesday and had fever/chills and couldn’t keep anything down. Late Friday night I went to the hospital. I was held for a week. My liver/gallbladder turned to mush. They ran “every test” including the Western Blot and couldn’t find anything wrong with me other than my liver/kidney/gallbladder numbers being way off.

On Wednesday they informed my husband if I didn’t turn around imminently that they’d have to air lift me to a better hospital that was more equipped to take care of someone so ill. That night I awoke to convulsing chills. I had 107 degree temperature. They put me on an ice bath. It was from there that my ailments subsided. I was on both antibiotics and antivirals.

We never found out what my mystery virus was, but I also never got better. I went back to my life in Connecticut. I got a puppy!

about 2 years later I became sensitized to a chemical in house paint. My husband started calling it my “super sniffer.” This affliction made me highly unwell/disoriented/rashy when I smell any man made odors such as fragrance/air freshener/beauty products. I had no idea this was a tell tale sign of late stage Lyme.

Last February I listened to The Invisible Kingdom (Meghan O’Rourke) where I related so much to her story, and only then learned about extended testing for Lyme. My god, I live in the state that Lyme is named for - and it took 11 years to learn that Lyme tests are not trustworthy!?

I failed miserably at antibiotics last April. My Herx reminded me of how sick I was in the hospital in 2012. My heart-dog was dying. I couldn’t be stuck in the hospital while losing him. I quit the medicine, and continued to feel sick for a few weeks. Grief is a vile emotion. I took the Summer off, feeling defeated. I started toying with Chinese Herbs for Lyme.

In December I started doing the sauna every morning and taking herbs from the Buhner Protocol. I don’t feel inclined to do antibiotics as I am not sure they wouldn’t make me worse somehow?

If you made it this far, thanks for reading. 💗
Posted 1/23/2024 9:55 PM (GMT 0)
Welcome to the forum, ABBAcat

Feeling worse while treating (herxheimer) often happens - and more common when taking abx than herbs.

If you have the time - it could be beneficial for you to read the “sticky thread” at the top of the forum.

Many people on the forum (past and present members) have used herbs to treat and have healed.
Posted 1/24/2024 11:36 AM (GMT 0)
Hello and Welcome ABBAcat

thank you for relaying your story - and sorry to hear of your suffering

it is a known phenomenon in the lyme community that many people with lyme do not recall any obvious tick bite - or a Bulls-eye-Rash - but become ill with lyme after some other trauma or acute disease, like an acute virus.

acute viral infections are known to dramatically lower the immune function of the individual - and this may be why lyme can take hold at that time. Similarly chronic stress from trauma is known to suppress the immune system - and likely works the same way.

another possibility worth investigating is the presence of co-infections
there is very little research on transmission of lyme by vectors other than ticks
there are 2 case reports in the scientific of lyme being transmitted by horse flies but little else
so far the organism seems to be highly co-evolved with its preferred tick vector and needs factors present in the tick to achieve transmission.

on the other hand, co-infection like bartonella are known to be commonly transmitted by many more common vectors - including biting flies, ticks, lice, fleas, and even spiders.

bartonella is also notorious for causing thinks like food sensitivities, chemical sensitivities, MCAS reactions etc
as well as strong herxhiemer like reactions. so this would fit your description quite well. it tends to need somewhat different antibiotics to lyme so is worth discovering if it is present.

as Girlie mentioned - the herxhiemer reactions or worsening of all symptoms - and often the occurrence of new ones - is a common part of treatment - its miserable but not forever.

Buhner Herbs helped me somewhat - the more anti-inflammatory herbs were mostly well tolerates - but i had very strong herxhiemer reactions from the more antimicrobial ones

i hope its of some help

all the best!
Posted 1/24/2024 2:38 PM (GMT 0)
Welcome to the forum! Many of us here can relate to your story. I have done herbal antimicrobial treatment with success, and have dealt with mast cell activation syndrome and multiple chemical sensitivities. This is a brutal illness, but you really can get better. Just hunker down, have patience, and keep trying things.
Posted 1/24/2024 2:58 PM (GMT 0)
Hello and welcome!

You connected the onset of illness with being bitten by mosquitoes. Were you ever tested for West Nile Virus? Malaria?

Multiple chemical sensitivity is often caused by mold exposure. Have you lived or worked in a building that ever had mold, leaks, or signs of water damage? You can do an ERMI test from Mycometrics to determine what you are being exposed to currently in your home.

Did you ever do any testing for Lyme or other infections with Igenex or any other Lyme specialty lab? Do you have the lab report with the Western blot that the hospital did? Were any bands positive on that Western blot?
Posted 1/24/2024 3:43 PM (GMT 0)

WalkingbyFaith said...
Hello and welcome!

You connected the onset of illness with being bitten by mosquitoes. Were you ever tested for West Nile Virus? Malaria?

Multiple chemical sensitivity is often caused by mold exposure. Have you lived or worked in a building that ever had mold, leaks, or signs of water damage? You can do an ERMI test from Mycometrics to determine what you are being exposed to currently in your home.

Did you ever do any testing for Lyme or other infections with Igenex or any other Lyme specialty lab? Do you have the lab report with the Western blot that the hospital did? Were any bands positive on that Western blot?

Hi! Thank you for your response.

I did have IGeneX testing last Spring and I am positive to European Lyme and American Lyme. I wouldn’t be surprised if there are others, and they just didn’t show up.

I was tested for mosquito borne illness and it was negative. When I was in the hospital they said they ran every test possible. That said, I had been living in CT for 3 years and just happened to be in Michigan because of my dad’s untimely death. It was very stressful, so perhaps I had been bitten in CT in the years prior, and didn’t know it.

Re: mold I was tested for it and there doesn’t seem to be a problem with it. I was also tested and no heavy metal issues either.
Posted 1/24/2024 3:46 PM (GMT 0)

saraeli said...
Welcome to the forum! Many of us here can relate to your story. I have done herbal antimicrobial treatment with success, and have dealt with mast cell activation syndrome and multiple chemical sensitivities. This is a brutal illness, but you really can get better. Just hunker down, have patience, and keep trying things.

Thank you. I appreciate you cheering me on. Have you tried Lion’s Mane for MCS? I have read it can help…
Posted 1/24/2024 3:51 PM (GMT 0)

Garzie said...
Hello and Welcome ABBAcat

thank you for relaying your story - and sorry to hear of your suffering

it is a known phenomenon in the lyme community that many people with lyme do not recall any obvious tick bite - or a Bulls-eye-Rash - but become ill with lyme after some other trauma or acute disease, like an acute virus.

acute viral infections are known to dramatically lower the immune function of the individual - and this may be why lyme can take hold at that time. Similarly chronic stress from trauma is known to suppress the immune system - and likely works the same way.

another possibility worth investigating is the presence of co-infections
there is very little research on transmission of lyme by vectors other than ticks
there are 2 case reports in the scientific of lyme being transmitted by horse flies but little else
so far the organism seems to be highly co-evolved with its preferred tick vector and needs factors present in the tick to achieve transmission.

on the other hand, co-infection like bartonella are known to be commonly transmitted by many more common vectors - including biting flies, ticks, lice, fleas, and even spiders.

bartonella is also notorious for causing thinks like food sensitivities, chemical sensitivities, MCAS reactions etc
as well as strong herxhiemer like reactions. so this would fit your description quite well. it tends to need somewhat different antibiotics to lyme so is worth discovering if it is present.

as Girlie mentioned - the herxhiemer reactions or worsening of all symptoms - and often the occurrence of new ones - is a common part of treatment - its miserable but not forever.

Buhner Herbs helped me somewhat - the more anti-inflammatory herbs were mostly well tolerates - but i had very strong herxhiemer reactions from the more antimicrobial ones

i hope its of some help

all the best!

Thank you so much! I was tested with IGeneX, but I wouldn’t be surprised if something was missed. I went to a nurse practitioner who is “Lyme literate” but the follow up wasn’t very good. She seemed like she only had one method of treatment. When I was failing at the antibiotics, there wasn’t any attempt at getting me back on track other than her telling me to get alkaselzer gold.

I don’t seem to be herxing on herbs - it’s been two months now. More headaches and body pains but that is about it. Makes me wonder if I am missing something!
Posted 1/24/2024 3:55 PM (GMT 0)

Girlie said...
Welcome to the forum, ABBAcat

Feeling worse while treating (herxheimer) often happens - and more common when taking abx than herbs.

If you have the time - it could be beneficial for you to read the “sticky thread” at the top of the forum.

Many people on the forum (past and present members) have used herbs to treat and have healed.

Thanks so much. I definitely will read the sticky thread (again?) if I have not already.

I feel like I am responding incorrectly. Do people “quote” every time they reply? 😭
Posted 1/24/2024 4:52 PM (GMT 0)
Your herx from herbs may be more subtle or different from how it was on pharmaceutical antimicrobials, so I would not worry yet about effectiveness concerns. It might be quite good news that you're finding the herbs more manageable!

I did not take lion's mane - even though from what I've read it's incredible for the nervous system! - because it can aggravate MCAS. I took it for a few days and definitely experienced histamine issues, so stopped.
Posted 1/24/2024 5:17 PM (GMT 0)
Hi! Your post caught my eye as you mentioned being bitten by mosquitoes while in a suburb of Detroit. Anyone who resides in this area is familiar with the brutality of mosquito attacks each summer. I have had Lyme disease for close to 11 years. I am doing a great deal better, but will add that I am very cognizant of any bite, I sustain whether it is from a mosquito or spider. I tend to take a couple of steps backward when an infected fog gets me. West Nile virus is not publicized much in the media but I believe presents a genuine problem for some of us. I now am extremely cautious not to hang outside much in the summertime , once the sun goes down.

I wish you all the best.
Posted 1/24/2024 7:28 PM (GMT 0)

ABBAcat said...


I feel like I am responding incorrectly. Do people “quote” every time they reply? 😭

you are doing fine - it does get overused quite a bit - its only really useful if there are multiple points and someone wants to indicate which bit they are replying to.
Posted 1/24/2024 8:25 PM (GMT 0)
Thanks @margaritalyme - cute name. I love a margarita 🍹

I definitely was tested for mosquito borne illnesses, but my feeling is that I either got Lyme from those bites or something in that interaction triggered my immune system to wake up an old case of Lyme.
Posted 1/24/2024 8:26 PM (GMT 0)
Thanks @garzie.

I have not figured out how to reply and *not* quote someone! I guess someday I will.
Posted 1/24/2024 11:15 PM (GMT 0)
ABBAcat:

Rather than clicking the "Quote Post" button in the the comment to which you're replying, simply scroll to the "Post Quick Reply" text box at the bottom of the page and enter your comment there.

You can quote posts, if you feel it's relevant. But, it's not always needed. Or, when selecting "Quote Post," you can delete unneeded or irrelevant parts of the text you're quoting.

Some members quote every word of every comment to which they're replying and it's not necessary. It makes the posts longer than needed and after a couple of nested quotes, the text gets all messed up, because the "Quote Post" feature went haywire a few years ago and the previous site owner never fixed it.

Me and a few others manually edit the mCode tags to make multiple quotes in one comment. If you need help, see the following guide: https://www.healingwell.com/community/mcode.aspx. It's pretty straightforward.

Feel free to ask questions.
Posted 1/25/2024 4:20 PM (GMT 0)
Glad to hear you tested for mold and metals and they didn’t appear to be a problem. That’s good news.
Posted 1/25/2024 5:01 PM (GMT 0)

The Dude Abides said...


Thank you!!

Posted 1/25/2024 5:11 PM (GMT 0)

WalkingbyFaith said...


Thank you. In my hunt to find out what as wrong with me - I went to a biological dentist who also gave homeopathy to me. I did all the regular suspects “clearing me” and then when I still wasn’t better he set me free with a “good luck.” But I do think maybe that is why I am clear. Or maybe the tests were wrong and I do have it! 🙃

Posted 1/25/2024 6:25 PM (GMT 0)
You're welcome, but it seems you're still using the "Quote Post" feature...this time without any of the original text from the person being quoted. Instead, it looks like your comments were said by someone else. Again, you can just type in the empty box that follows the last comment in the thread.

Update: Here's a screenshot I marked up that might better explain what I was trying to convey in words: IMAGE

_

Post Edited (The Dude Abides) : 1/25/2024 10:58:33 AM (GMT-8)

Posted 1/25/2024 8:04 PM (GMT 0)
You’re so kind, thank you! I tried it but I didn’t see your name and was worried I wasn’t replying to you - but the person who commented after you. I was in luck this time because no one posted after you, so I am presuming it’s going to you !
Posted 1/25/2024 8:57 PM (GMT 0)
Howdy, ABBAcat:

Happy to help. Comments posted here don't go to anyone specifically. They're posted here for everyone to see.

When making a new, initial post, the author can check the box "Notify me of reply postings by e-mail" to receive replies via e-mail, but that's only for the author to receive replies. Those who make subsequent comments do not receive any such notifications.

If writing a reply using the method I previously mentioned, you could simply note the screen name of the person you're addressing, if it's not obvious. For example, I typed your screen name at the start of this particular comment.

Now, as mentioned previously, there may be times when using the "Quote Post" feature is desirable. It's not my intent to dissuade you from using it. Rather, my replies were to address your concern:

ABBAcat said...
I have not figured out how to reply and *not* quote someone! I guess someday I will.

As you can see, I embedded your quote inside this comment. But, I deleted the comment you directed at Garzie. Thus, if using "Quote Post," you can delete parts of the quote that aren't needed. This is helpful for extremely long posts that don't need to be quoted in their entirety.

So, this...

The Dude Abides said...
Yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah, yadda, yadda, yadda, blah, blah, blah.

Can be edited down to this...

The Dude Abides said...
Yadda, yadda, yadda, blah, blah, blah.

I just deleted the parts that weren't relevant or needed.

Okay, I realize I'm belaboring the point a bit. My apologies. It's partially how I'm wired and partially due to my former occupations. I'll leave it here, but if you have any questions or would like some personal tutoring (for free, of course), feel free to e-mail me directly. You can find my e-mail address by clicking on my screen name.
Posted 1/26/2024 6:35 PM (GMT 0)
Thank you.
Posted 1/28/2024 1:30 PM (GMT 0)
Interesting enough, as I re listen to Buhner’s book - in the first few minutes he talks about mosquitoes as a vector for Lyme co-infections. I mentioned this in my original post, but found it interesting to hear again.

Also, CFN is found in 86% of Lyme patients. It might explain my horrible response to antibiotics. I was sick for a month after stopping it.
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