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Posted 8/30/2021 8:39 PM (GMT 0)
Hi all,

I am brand new to this forum. I literally just signed up. I have been having unexplainable health problems since December 2020, but they got debilitating in April 2021. I am going to give a whole background on my story, and why I am coming to the thought that my problems could be a result of undiagnosed, late Lyme disease.

2015: I went to a state park with my friend. The next day, I noticed a small bullseye on my leg. It wasn't very red or anything, but I truly thought it looked like a bullseye. I immediately went to Urgent Care. They looked at me like a lunatic and did absolutely nothing and sent me home. Never got sick, never had any real issues. I completely forgot about it.

Fast forward to September 2020: I got COVID and it was a very mild case. Mainly just sore throat, body aches and lost smell/taste. Recovered fully in 2 weeks.

I randomly passed out in October 2020 and it was pretty scary. It took me a couple hours to get over it. I thought it was very strange, but I have passed out randomly before in my life so I never really questioned it.

December 2020: I found out I was pregnant, and the following day I miscarried. At the exact same time, I developed tinnitus. I thought that was very strange as there's really no correlation to tinnitus/miscarriage. I was only about 5 weeks along. My miscarriage was very severe. Tons of bleeding for about 2 weeks, severe cramps (I nearly went to the ER), chills, feeling faint, fever of 100.4. I went to my Gyno and she said some people get an infection and she put me on antibiotics. That was the end of it. I fully recovered in about 1 month (besides the tinnitus).

After my miscarriage, I noticed I would start getting what I call "pre-panic attacks". I would feel this insane adrenaline rush in my head and I would have to get up and walk around to shake it off. This started happening every couple weeks. It was very scary, but I just attributed it to stress and anxiety after the miscarriage.

April 2021: When all hell broke loose. I woke up on morning and out of nowhere, had the most terrifying panic attack of my life. That same "pre-panic attack" adrenaline feeling finally hit and I couldn't stop it anymore. It was so severe, I truly thought I was dying. I felt like I lost my mind. I was immediately derealized and dissociated. My HR was 150 and I was just pacing outside around my house to try to make this stop. It lasted for hours. I thought I was having a stroke. The next day, one side of my face went completely numb and that's when I made my mom take me to the ER. They did all the tests and said I had a panic attack and sent me home.

The best way I can describe this panic attack is like a bomb went off in my head. It really feels like something attacked my brain. I have never felt like this in my life before.

A few days later, my sister suggested I take a bentonite clay bath to try to detox whatever was inside me. I took a bath and probably used way too much clay (my fault). However, after only 10 minutes, I had to get out. I developed the most intense, severe, pounding headache and my heart was literally beating out of my chest. I then started violently vomiting and had to just go to sleep. I have never been so severely ill in my life. There is OBVIOUSLY something inside me that the clay was trying to draw out, and I pissed it off.

It felt like there was a blockage on the left side of my brain next to my eye. I am not sure how to best explain it, but it felt like I could not see out of my eye (even though I could). This intense "blockage" feeling lasted for a few months, but has since relaxed for the most part.

2 weeks later, I had a 2nd panic attack (also random and just happened to me), and developed visual snow, after images, blurry vision, etc. It just feels like my vision is severely damaged - like my eyes and my brain don't match up anymore.

I have been to more doctors than I can count and have had several tests. Everything comes back normal every time.

I have never felt the same since that panic attack. I am left with several debilitating symptoms that have reduced my quality of life to zero. To this day, these symptoms include:

-Tinnitus
-Visual snow
-Blurry vision
-After images (positive/negative)
-Severe brain fog (cannot concentrate, cannot hold conversations, any thinking is basically impossible)
-Dissociation/Derealization
-Head pressure/daily headaches
-Severe fatigue (never feel rested no matter what - just feel like a zombie)
-Feels like my brain and eyes don't work anymore. So disoriented
-Dizzy/lightheaded
-Feeling like I could pass out
-Just feeling like I am high/drunk 24/7 without consuming either of those

Everything is mainly neurological. I do not like to use this word, but I feel like I am mentally challenged now. I feel stupid.

My hypothesis is that the Lyme has been dormant in my body all these years. COVID and my miscarriage sent it into overdrive and awakened it. I believe it caused my miscarriage in the first place along with the tinnitus.

I just want to know if anyone has any similar experiences. I am trying to get in to see an LLMD. I truly do not believe this could be Long Covid because it's just way too extreme and everything happened very suddenly. I don't think Long Covid would feel like something literally poisoned your brain.

Please if anyone has any similar experiences, I'd really appreciate it. I am desperate and each day is getting harder and harder.
Posted 8/30/2021 8:58 PM (GMT 0)
kcrose94,

Hello and welcome! Glad you found this forum. I am so sorry for your suffering and the lack of help from the medical profession. I am very glad that you are seeking an LLMD, because you definitely need one.

I have heard many stories very similar to yours. I am wondering if you have babesia, another tick borne disease. Some of the infections have identifiable cycles. You mentioned the panic attacks happen every couple of weeks. Babesia can disproportionately affect the head - so lots of head symptoms.

Many people have mild or asymptomatic Lyme and never know anything is wrong until months or years later. Other acute illnesses (like COVID), trauma (like miscarriages), high stress, and anything that hits the immune system can cause symptoms from Lyme and/coinfections to appear.

Of course, it’s also possible that you could have had a new infection from a bite you were unaware of.

The clay bath episode could have been triggered as much by hot water as the clay, if you used hot water. You may have dysautonomia. POTS is an example.

A good LLMD should be able to help you get better and get your life back.

I am so sorry about your miscarriage and the loss of your baby. God bless you and comfort you.🙏
Posted 8/30/2021 9:05 PM (GMT 0)
Thank you so much, I really appreciate you taking the time to comment and your kind words.
Posted 8/30/2021 9:08 PM (GMT 0)
i don't have any direct experience i can share but i can assure you that your story is not unlike many here

sudden onset of neurological conditions is a common sign of lyme and or co-infections

Dr S P - author of the book Chronic - and well regarded Yale educated LLMD - says he believes its relatively common for people to develop lyme or co-infections active disease after covid - or after any other viral infection of trauma

bartonella in particular is renowned for causing extreme anxiety attacks - often followed by depression afterwards

my partner developed unstoppable anxiety, rages and passing out due to what we believe was combined lyme disease and bartonella infections. she was also told she was hysterical and dismissed by a infectious disease doctor.

several of the co infections are indeed also linked to spontaneous abortion - bartonella, q-fever, babesia too i think - in animals anyway

being turned away from primary care and told you are just suffering with anxiety is also par for the course - particularly if you are female

you are not crazy - finding a good LLMD sounds like a good plan

good luck

people here will also help and support - they are a decent bunch smile
Posted 8/30/2021 9:40 PM (GMT 0)
Thank you so much - I really appreciate the reply. I have been told my every Western medicine doctor that it's all in my head and that I need to get on anti-depressants. I know I am not crazy, even though this illness makes me feel like I am!
Posted 8/30/2021 10:04 PM (GMT 0)
I see a Doc in St. Louis and the two things we did that had a major impact on my health was treating parasites and dental. We needed a biological dentist to help, Removed root canals and metals.
You may want to see a biological dentist and get a check up
Posted 8/31/2021 2:53 AM (GMT 0)
I dunno, you had two huge precipitating events, covid and a miscarriage. It seems like Occams Razor may apply here. Autoinflammatory after effects of covid can 100% cause symptoms like Bell’s palsy, visual snow, etc.

I’d get tested for lyme and confections, but it may very well may turn out that this is an immune response from covid. I’m just being realistic.

And that may sound upsetting to hear, because at least w lyme+coinfection, you’ve got a course of action and it feels good to know. But you don’t want Bartonella, at least w long covid it’s likely to eventually resolve on its own.

Where are you located? IVIG may be a huge help w this if it were long covid
Posted 8/31/2021 10:38 AM (GMT 0)
"Thank you so much - I really appreciate the reply. I have been told my every Western medicine doctor that it's all in my head and that I need to get on anti-depressants. I know I am not crazy, even though this illness makes me feel like I am!"

You're definitely not crazy and anti-depressants aren't the answer...

The rash from 2015 may have been erythema migrans (Lyme rash), but it seems unlikely that you would have gotten it from the state park. I think it takes a week or two for the rash to develop.

I see this the same way as dcd. It's also possible that covid played a role in the miscarriage
Posted 8/31/2021 10:47 AM (GMT 0)
Did you get a positive covid test or a diagnosis?
Posted 8/31/2021 11:51 AM (GMT 0)
When I saw this post. I feel like I had been reading something that I would have written in 2015. I wish someone who was experiencing my symptoms could have told me from a positive position that it gets better. I never thought that I would get better. I couldn't see any light at the end of the tunnel. However, I am now much better and was able to heal majority of it although it did take a few years. Never ever lose hope. I used a wide range of healing modalities.

This is what I did that I feel made the biggest difference -
- Dry fasting(however I only did this once I had been detoxing/eating clean for a year) I have down several 3 day dry fasts and a 5 day dry fast.. but again I slowly built up. If you do do this make sure your bowels are cleared otherwise it won't be effective).

- I did full Buhner protocol for Lyme, Bartonella and Babesia. I bought herbs in bulk and did that for 2 years.

- I did a 1 year parasite cleanse - parasites often cause quite a bit of issues. Make sure if you do a parasite cleanse make sure your having at least 2 bowel movements each day(sorry for the grossness. I followed the parasite cleanse on realfoodrebel(google it)

- Medical medium - Heavy metal detox smoothie every morning (google the ingredients) - is expensive but helped me with clearing out any heavy metals. Especially as my symptoms were just like yours neuro issues.

-I also bought a cheap portable infared sauna. I also took Niacin to help with the detoxification process. Once out of the sauna I always took a binder(Activated Charcoal or Zeolite). *** I no longer use this as I worry about the toxic materials it might have been made from** I encourage you to maybe find a gym near you where they have an infared sauna.

-Fruit fast. I know it sounds extreme. And it took me 3 years to finally do it. I often do it 10 days at a time. I don't think vegan or plant eating is the most sustainable long term. But for deep detox - this is the best.

- Organic eating. I know it's super expensive and it frkn sucks. But what sucks even more is feeling so crap every day or every hour. Do what you can. Google clean and dirty list. Do NOT eat gluten, dairy or processed sugars. Feed your body what it deserves and I promise it will come good. I promise.

-Grounding - I try to spend 30 minutes walking outside barefoot. Sounds super strange and scary especially since an insect cause all these issues. However, I find it empowering and relaxing. I also find that I sleep much better and just feel overall amazing what I do this.

- Vitamin D - try to get as much Vitamin D as posssible from natural sources. Do not use sunscreen as it's filled with chemicals that will make all your detox efforts counterproductive. If you burn easily slowly build up and use only early sun or later evening sun.

- Wim hof breathing and cold showers(slowly build up - I still can't stay in as I'm too chicken lol) - youtube - Wim Hof + Brian Eno Guided Breathing (4 rounds with introduction). I also do this amazing Guided breathwork by Pushing Beauty on youtube. Super relaxing. Anything that you can do to get your body relaxed and into parasympathetic Nervous System the quicker you heal.


Just please. do NOT believe the doctors that say it is in your head. It is NOT in your head. Please do NOT ever give up on yourself. You will heal. Think positive. Do right for your body. You will get better.
Posted 8/31/2021 2:04 PM (GMT 0)
Hi fighting for health,
Thank you so much for taking the time to respond. It’s truly appreciated.
I’d love to hear more about your story if you ever want to connect offline.
Posted 8/31/2021 2:34 PM (GMT 0)

kcrose94 said...
Hi all,

I am brand new to this forum. I literally just signed up. I have been having unexplainable health problems since December 2020, but they got debilitating in April 2021. I am going to give a whole background on my story, and why I am coming to the thought that my problems could be a result of undiagnosed, late Lyme disease.

2015: I went to a state park with my friend. The next day, I noticed a small bullseye on my leg. It wasn't very red or anything, but I truly thought it looked like a bullseye. I immediately went to Urgent Care. They looked at me like a lunatic and did absolutely nothing and sent me home. Never got sick, never had any real issues. I completely forgot about it.

Fast forward to September 2020: I got COVID and it was a very mild case. Mainly just sore throat, body aches and lost smell/taste. Recovered fully in 2 weeks.

I randomly passed out in October 2020 and it was pretty scary. It took me a couple hours to get over it. I thought it was very strange, but I have passed out randomly before in my life so I never really questioned it.

December 2020: I found out I was pregnant, and the following day I miscarried. At the exact same time, I developed tinnitus. I thought that was very strange as there's really no correlation to tinnitus/miscarriage. I was only about 5 weeks along. My miscarriage was very severe. Tons of bleeding for about 2 weeks, severe cramps (I nearly went to the ER), chills, feeling faint, fever of 100.4. I went to my Gyno and she said some people get an infection and she put me on antibiotics. That was the end of it. I fully recovered in about 1 month (besides the tinnitus).

After my miscarriage, I noticed I would start getting what I call "pre-panic attacks". I would feel this insane adrenaline rush in my head and I would have to get up and walk around to shake it off. This started happening every couple weeks. It was very scary, but I just attributed it to stress and anxiety after the miscarriage.

April 2021: When all hell broke loose. I woke up on morning and out of nowhere, had the most terrifying panic attack of my life. That same "pre-panic attack" adrenaline feeling finally hit and I couldn't stop it anymore. It was so severe, I truly thought I was dying. I felt like I lost my mind. I was immediately derealized and dissociated. My HR was 150 and I was just pacing outside around my house to try to make this stop. It lasted for hours. I thought I was having a stroke. The next day, one side of my face went completely numb and that's when I made my mom take me to the ER. They did all the tests and said I had a panic attack and sent me home.

The best way I can describe this panic attack is like a bomb went off in my head. It really feels like something attacked my brain. I have never felt like this in my life before.

A few days later, my sister suggested I take a bentonite clay bath to try to detox whatever was inside me. I took a bath and probably used way too much clay (my fault). However, after only 10 minutes, I had to get out. I developed the most intense, severe, pounding headache and my heart was literally beating out of my chest. I then started violently vomiting and had to just go to sleep. I have never been so severely ill in my life. There is OBVIOUSLY something inside me that the clay was trying to draw out, and I pissed it off.

It felt like there was a blockage on the left side of my brain next to my eye. I am not sure how to best explain it, but it felt like I could not see out of my eye (even though I could). This intense "blockage" feeling lasted for a few months, but has since relaxed for the most part.

2 weeks later, I had a 2nd panic attack (also random and just happened to me), and developed visual snow, after images, blurry vision, etc. It just feels like my vision is severely damaged - like my eyes and my brain don't match up anymore.

I have been to more doctors than I can count and have had several tests. Everything comes back normal every time.

I have never felt the same since that panic attack. I am left with several debilitating symptoms that have reduced my quality of life to zero. To this day, these symptoms include:

-Tinnitus
-Visual snow
-Blurry vision
-After images (positive/negative)
-Severe brain fog (cannot concentrate, cannot hold conversations, any thinking is basically impossible)
-Dissociation/Derealization
-Head pressure/daily headaches
-Severe fatigue (never feel rested no matter what - just feel like a zombie)
-Feels like my brain and eyes don't work anymore. So disoriented
-Dizzy/lightheaded
-Feeling like I could pass out
-Just feeling like I am high/drunk 24/7 without consuming either of those

Everything is mainly neurological. I do not like to use this word, but I feel like I am mentally challenged now. I feel stupid.

My hypothesis is that the Lyme has been dormant in my body all these years. COVID and my miscarriage sent it into overdrive and awakened it. I believe it caused my miscarriage in the first place along with the tinnitus.

I just want to know if anyone has any similar experiences. I am trying to get in to see an LLMD. I truly do not believe this could be Long Covid because it's just way too extreme and everything happened very suddenly. I don't think Long Covid would feel like something literally poisoned your brain.

Please if anyone has any similar experiences, I'd really appreciate it. I am desperate and each day is getting harder and harder.

I’ve had many of your symptoms, almost every single one. I strongly believe this is Lyme. Many extreme situations can bring Lyme out. Having to get steroids, an extremely stressful situation messing with the immune system, Covid etc. so all of that makes me believe you are dealing with Lyme and CO and that your body is struggling with them taking over.

I would recommend seeking out an LLMD like you are already doing. The issue is I’ve been to several LLMDs and a lot of them are unqualified and don’t know what they are doing. If you have the time I would reach out to the Jemsek Clinic. They will stabilize you early on and help alot of your symptoms become more tolerable right off the bat. I don’t know your location but if you are trying to stay local I’d do some research on the best LLMD around you which you could do in Lyme disease Groups on Facebook. Lots of personal reviews on there. Hope this helps
Posted 8/31/2021 3:13 PM (GMT 0)
Thank you so much, ltc!

I’d love to hear more about your story if you’re willing to connect!
Posted 8/31/2021 8:16 PM (GMT 0)
As to all those symptoms being a “post viral syndrome” and unrelated to Lyme or other tick borne infections, I don’t know about that. That would be a stretch, IMO. I can believe continuing fatigue, joint and/or muscle pain being post-viral unrelated to these infections, but not that list of symptoms.

Are there people posting a list of post-COVID symptoms like this on the internet? I don’t doubt it. I believe many people have dormant Lyme/co that is undiagnosed and it can become active after an illness like COVID.

I recently saw an episode on a reality show where one of the family members did not recover after COVID. She said they were looking into whether it was long haulers or possibly Lyme disease.

You had a previous tick bite and bullseye rash that was ignored and unsymptomatic at the time.

A good LLMD should be able to determine what may be post-COVID and what is more likely to be Lyme/co and treat accordingly.

Even on conventional medical sites, they acknowledge that symptoms can occur long after the initial tick bite. Mayo Clinic website (https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651 ) says under later signs, symptoms: “Weeks, months or even years after infection, you might develop inflammation of the membranes surrounding your brain (meningitis), temporary paralysis of one side of your face (Bell's palsy), numbness or weakness in your limbs, and impaired muscle movement.”

“ See your doctor even if symptoms disappear

Visit your doctor even if signs and symptoms disappear — the absence of symptoms doesn't mean the disease is gone. Untreated, Lyme disease can spread to other parts of your body for several months to years after infection, causing arthritis and nervous system problems. Ticks can also transmit other illnesses, such as babesiosis and Colorado tick fever.”

Post Edited (WalkingbyFaith) : 8/31/2021 2:40:43 PM (GMT-6)

Posted 8/31/2021 11:03 PM (GMT 0)
I’m so sorry you are going through this. I definitely think this could Lyme or Coinfections. It could have been in your body for awhile and the stress on the body from covid and miscarriage brought it out.

I think a good course of action would be to seek out a LLMD and try to get some testing for lyme and coinfections. The testing is not perfect, but it could give you a better idea about what you are dealing with.

Another route could be to try out how herbs and see how you react to them. If you herx it could give you a pretty good idea you have lyme.

Unfortunately, you probably won’t get my help from your PC or an ID doctor if your lab work looks “normal” like many of us have been told before we when what was going on.
Posted 8/31/2021 11:17 PM (GMT 0)

kcrose94 said...
Thank you so much, ltc!

I’d love to hear more about your story if you’re willing to connect!

What platforms are you on to talk?
Posted 8/31/2021 11:27 PM (GMT 0)
I have Instagram and Facebook
Posted 9/1/2021 2:16 AM (GMT 0)
I would be happy to help in any way that I can. I'm not sure how to connect through this forum. Could you send over your email?
Posted 9/1/2021 3:11 AM (GMT 0)
Yes! I just made my email available on my profile.
Posted 9/1/2021 6:09 PM (GMT 0)

potsnpans said...

WBF said...
You had a previous tick bite and bullseye rash that was ignored and unsymptomatic at the time.


Not sure if this is accurate.. kcrose94, are you aware of a tick bite before the rash?



“ 2015: I went to a state park with my friend. The next day, I noticed a small bullseye on my leg. It wasn't very red or anything, but I truly thought it looked like a bullseye.“

Bullseye - but no mention of seeing a tick.
BUT - a bullseye is enough even if tick wasn’t seen
Posted 9/1/2021 9:45 PM (GMT 0)
Yes Girlie is right. A typical bullseye rash is indicative of lyme. No further lyme testing required. If you get a bullseye rash make sure to photograph it.
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