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Posted 11/19/2018 9:35 AM (GMT 0)
Before I begin with my story I want to go ahead and apologize for the length of it. I am posting here because it is 4:00 a.m & I have not slept due to researching the web and looking for something deep down I know I’ll never find.. a defiant answer. I’m hoping posting here and telling my story maybe some of you can tell me what you think is wrong with me.

I am 24 years old & started noticing problems when I was 21. I was working and started noticing episodes of just fog! Just a crazy head change. These episodes would come & leave within a hour. Although I was concerned I wasn’t as concerned as I should have been. I did see my doctor about it but nothing came of it as everything looked fine.

Fast forward a year and a half and I still have these episodes. It seemed to always happen when I was at work and was feeling tired. Maybe I was dealing with some fatigue that I just didn’t notice. I also noticed the fog would seem to leave once I would leave work and get some fresh air and natural light or something.

I later moved to a apartment and that’s when things turned for the worse. The first day went fine but when I woke up the next morning I got that foggy feeling again but this time it wasn’t just a episode, it never went away like it usually did.

I began searching for the answer in panic. But yet nobody had one. After weeks of this brain fog feeling I noticed I was sleeping a lot more and just feeling awful! I began getting more and more symptoms as time passed. Symptoms like
Chronic fatigue
Unrefreshing sleep (never felt rested a single day since that day)
Muscle twitching
Cognitive decline - this one is the one that bothers me more then anything. Everything is harder for me to do now and the things I use to do and think was easy has become challenging. I have blurred thinking, memory loss, concentration problems where I just stare into space at time. Learning new things has become super hard for me now a days.

Frequent urination

Weight gain

Mood swings

Depression

Anxiety

Random stabbing pains sometimes.


The thing is I have seen a Lyme literate doctor who diagnosed me with Lyme, bart, & babesia. This is where it gets tricky for me. While experimenting with antibiotics for about 8 months I never noticed any significant reaction to the them. Only thing I noticed was after stopping them after about 8 straight months of taking them I had about 2 or 3 days where I felt some more energy which I felt like I hadn’t had in years. All of this led me to believe maybe I do not have Lyme disease and that’s when I stumbled across mold illness and cirs.

The fact that it took one night in that apartment to change so much. I have had lots of bloodwork done also. Things abnormal I’m my labs are

Low testosterone
Low vitamin D
Western blot band 23 igg
Low cd57 which got even lower after the treatment I did.
Low msh
High DHEA Sulfate
Low VEGF
T3 was a bit high
Also I had the hla panel done and my doctor said I have genetics of those who don’t fight Lyme or mold well and causes lots inflammation.


I am seeing a new doctor in a couple weeks and I’ve got a real good feeling about this one. But what do you all think? Do I have Lyme, do I have CIRS? What’s wrong with me!? The constant anxiety and fatigue makes life difficult.

Post Edited (Tarheels8) : 11/19/2018 2:38:03 AM (GMT-7)

Posted 11/19/2018 10:17 AM (GMT 0)
I also want to add that I don’t really feel like I’m in as bad shape as people I see talk about having Lyme. I’m not bed ridden or anything. I work full time although it nearly kills me but it’s possible. I’m really just so unsure. I hope this isnt Lyme.
Posted 11/19/2018 2:52 PM (GMT 0)
Hi Tarheels8 and welcome to the forum!!! It's so hard to say, given your symptoms it certainly could be lyme or some sort of infections-combo. Did you treat for all 3 infections you mentioned in those 8 months? how did you treat the babesia? did you have any lab results in regards to the infections?

I think it's good to look into other possibilities outside of lyme/coinfections but certainly would keep that possibility in mind given your symptom make-up. Have you tried any herbal protocols? It may be worth trying, generally lower risk/good potential reward with that. I particularly like Stephen Buhner, his website has some of the basic protocols and some info. His books are especially helpful and informative.

Are you doing any detoxing? implementing various detox methods might potentially help some of the symptoms (if issues are due to infections/toxin load).

Other things worth exploring are heavy metals and mold.

I hope you get to the bottom of it soon! wishing you all the best in your healing journey.
Posted 11/19/2018 6:16 PM (GMT 0)

Tarheels8 said...
Before I begin with my story I want to go ahead and apologize for the length of it. I am posting here because it is 4:00 a.m & I have not slept due to researching the web and looking for something deep down I know I’ll never find.. a defiant answer. I’m hoping posting here and telling my story maybe some of you can tell me what you think is wrong with me.

I am 24 years old & started noticing problems when I was 21. I was working and started noticing episodes of just fog! Just a crazy head change. These episodes would come & leave within a hour. Although I was concerned I wasn’t as concerned as I should have been. I did see my doctor about it but nothing came of it as everything looked fine.

Fast forward a year and a half and I still have these episodes. It seemed to always happen when I was at work and was feeling tired. Maybe I was dealing with some fatigue that I just didn’t notice. I also noticed the fog would seem to leave once I would leave work and get some fresh air and natural light or something.

I later moved to a apartment and that’s when things turned for the worse. The first day went fine but when I woke up the next morning I got that foggy feeling again but this time it wasn’t just a episode, it never went away like it usually did.

I began searching for the answer in panic. But yet nobody had one. After weeks of this brain fog feeling I noticed I was sleeping a lot more and just feeling awful! I began getting more and more symptoms as time passed. Symptoms like
Chronic fatigue
Unrefreshing sleep (never felt rested a single day since that day)
Muscle twitching
Cognitive decline - this one is the one that bothers me more then anything. Everything is harder for me to do now and the things I use to do and think was easy has become challenging. I have blurred thinking, memory loss, concentration problems where I just stare into space at time. Learning new things has become super hard for me now a days.

Frequent urination

Weight gain

Mood swings

Depression

Anxiety

Random stabbing pains sometimes.


The thing is I have seen a Lyme literate doctor who diagnosed me with Lyme, bart, & babesia. This is where it gets tricky for me. While experimenting with antibiotics for about 8 months I never noticed any significant reaction to the them. Only thing I noticed was after stopping them after about 8 straight months of taking them I had about 2 or 3 days where I felt some more energy which I felt like I hadn’t had in years. All of this led me to believe maybe I do not have Lyme disease and that’s when I stumbled across mold illness and cirs.

The fact that it took one night in that apartment to change so much. I have had lots of bloodwork done also. Things abnormal I’m my labs are

Low testosterone
Low vitamin D
Western blot band 23 igg
Low cd57 which got even lower after the treatment I did.
Low msh
High DHEA Sulfate
Low VEGF
T3 was a bit high
Also I had the hla panel done and my doctor said I have genetics of those who don’t fight Lyme or mold well and causes lots inflammation.


I am seeing a new doctor in a couple weeks and I’ve got a real good feeling about this one. But what do you all think? Do I have Lyme, do I have CIRS? What’s wrong with me!? The constant anxiety and fatigue makes life difficult.

Welcome, Tarheels.

You mentioned you got worse when you moved. I'm wondering if it's a mold exposure that made you worse.
...or perhaps if the move was stressful, your immune system allowing Lyme (if you do have it) to flourish.

...and then perhaps you have both going on. You could have your apartment tested for mold levels...just to be sure it's not your environment.

You did have band 23 show up on testing...and that band is specific to lyme disease.

I'm also curious to know what your treatment for lyme and co's was? If it was just lyme treatment...or the confections as well.
Posted 11/19/2018 6:38 PM (GMT 0)
Does your work environment have moisture or mold? This is probably accumulated stressors rather than a single cause.
Posted 11/19/2018 10:20 PM (GMT 0)
I was on all sorts of things. My doctor didn’t reallu set out a game plan, she really just threw medicine at me. At first I was just on rifampin for abou 4 months. Although I had been sick for years my doctor acted like I should have already been better or something which was when I started doubting my doctor because I know that if it is indeed Lyme & I have had it for years I’m not gonna be better over night.

After that she tried me on a protocol which she seen on Facebook.. this protocol was to target Lyme & it’s co infections in 2 phases. Phase one was suppose to fix the Lyme, I took minocycline, tindazole for about 4 months. Once I was done with that I wasn’t feeling any better. & phase 2 was a medication that was suppose to target co infections. I cant remember what It was called though.

At this point I’m just really discouraged. THE worst part is not know for sure what’s wrong with me. I wish I could have had a strong reaction to the antibiotics so that i knew for sure. Why do you all think that once I quit the medicine I had about 3 days of feeling better? Is this a sign that maybe I was hitting something?
Posted 11/19/2018 10:52 PM (GMT 0)
You have both - Lyme and CIRS. So do I. You seriously need to avoid mold and research cross contamination of personal belongings.
Posted 11/20/2018 12:19 AM (GMT 0)

WalkingbyFaith said...
You have both - Lyme and CIRS. So do I. You seriously need to avoid mold and research cross contamination of personal belongings.

WBF - educate me. Is that determined by the low MSH and VEGF?
Posted 11/20/2018 12:49 AM (GMT 0)
Wbf, that’s kinda what I thought too. What makes you sure of it?
Posted 11/20/2018 1:11 AM (GMT 0)
I don't know what it means that you felt well for 3 days after the treatment. It sounds like your doctor was inexperienced treating the infections. I think looking into mold makes a lot of sense. May want to look into various detox methods like cholestyramine (this is rx, you'd want to work with a doc who has experience with something like this), infrared sauna... I've heard those can help detoxing from mold and other things as well, could be worth trying to see if they help your symptoms.

I'd consider trying to see an llmd with better experience and/or someone who can work with you on mold. My guess is that working on both mold and the infections could end up being helpful. But given your lack of response to treatment it may be mold that is holding you back.
Posted 11/20/2018 2:39 AM (GMT 0)

Girlie said...

WalkingbyFaith said...
You have both - Lyme and CIRS. So do I. You seriously need to avoid mold and research cross contamination of personal belongings.

WBF - educate me. Is that determined by the low MSH and VEGF?

Girlie,

There’s a whole gamut of labs done for CIRS. They don’t all have to be abnormal, but most people will have quite a few abnormal. Abnormal labs with an HLA-DR/DQ gene susceptible to mold, Lyme, or multi susceptible, and exposure to mold or Lyme or both amounts to CIRS.

Here’s a link to the labs:
https://www.survivingmold.com/diagnosis/lab-tests

Tarheels said he/she had low MSH, low VEGF, and the genetic susceptibility. That’s CIRS. Genetic susceptibility plus exposure plus symptoms equals CIRS.

Post Edited (WalkingbyFaith) : 11/19/2018 7:43:11 PM (GMT-7)

Posted 11/20/2018 3:19 AM (GMT 0)
Walkingbyfaith do you think it’s possible I may not have Lyme & just have CIRS?

I know band 23 is Lyme specific & cd57 usually means chronic Lyme
Posted 11/20/2018 3:45 AM (GMT 0)

Tarheels8 said...
Walkingbyfaith do you think it’s possible I may not have Lyme & just have CIRS?

I know band 23 is Lyme specific & cd57 usually means chronic Lyme

Cd57 doesn’t usually mean chronic Lyme - it can be from other diseases. It CAN be lyme.
Band 23 is lyme.
Posted 11/21/2018 1:05 AM (GMT 0)

Tarheels8 said...
Walkingbyfaith do you think it’s possible I may not have Lyme & just have CIRS?

Possible. The Lyme could be a past infection and symptoms could be from CIRS. If you can get a really knowledgeable CIRS doctor to work with you and you are willing to do whatever is required as far as avoiding mold and cross contamination, you could certainly go that route first. If it works and resolves your symptoms, then it’s a win-win. If it doesn’t, then you’ll need to treat Lyme/coinfections in addition to mold avoidance/mold detox.

You may need cholestyramine as a binder for mold and Lyme toxins, if you can tolerate it. It was too strong for me and made my symptoms unbearable. I use modified citrus pectin and activated charcoal instead. I also use liposomal glutathione and NAC to help detoxification.

Post Edited (WalkingbyFaith) : 11/20/2018 6:09:22 PM (GMT-7)

Posted 11/21/2018 1:27 AM (GMT 0)
Sounds a lot like mold illness - the brain fog, urination, stabbing pain.

Did you have adh tested? May explain the urination. Mine was not even detectable.

Are you in NC (tarheel)? There’s a good mold/lyme doc in chapel hill. Dr S R.
Posted 11/21/2018 5:36 AM (GMT 0)
yes you should do an extremely strategic anti-mold protocol, regardless if you can determine if it is the problem or not. I think even a single spec of mold within 50-100ft could possibly cause this, where was a normal person without lyme would not have issue.

I would buy a $39 HEPA filter with UVC fan on amazon, search for HEPA and price around $39. The filters are 2 for $14
The cheaper version of this is a $20 box fan with a $8 MERV filter duct tape on the inlet side of the fan.

I would buy a humidity meter and make sure your humidity is under 50%. If it goes above that, I would spend $250 on a heavy duty house de-humidifier and set it to 35%. It will spend about $.15-.75 in electricity a day so that ends up being a lot you want to consider that.

I would eat a sugar free diet and take, every other day, a large dosage of 1table spoon Fiber (Psyillium Husk) and Probiotics rating in the B for Billions Unit in Colonaries. Take 4x dosage if it is only 250 million to get to the B.

I would take Spirulina tablets for anti-mold detox. This is probably the best possible thing you can do right now because it has a dual method of action to remove toxins including whatever lyme toxins or co-infection toxins produced in your body, while preventing mold growth.

I would wash all your laundry with 1 cup of Epsom Salt. a 50 pound bag at a farm supply store goes for about $15-$25 and will last 6 months. I would also take a shower with a cloth and bucket of warm water mixed with 1 cup of epsom salt, everyday. This prevents mold growth in both your clothing (bedsheets) and on your skin. Epsom Salt is magnesium sulfate, the sulfer seems to be the anti-mold method of action. It is also said it can detox your body and kill parasites/co-infections which I believe to be true. It is also a great fabric softener and won't harm your cloths. You will smell and feel better.

I would change your shower curtins. I would wash everything down with Citric Acid (LA total awesome dollar tree) twice. I would change all your filters, or have your apartment manager check their filters.

I think these are some options, in combination, that will help eliminate the possibility of mold if it is a factor. Relatively cheap for a higher quality of life.
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