Do I have Lyme disease?

Diseases & Conditions Lyme Disease
1
Hey everyone I'm new here! I'm gonna give you a little bit of my history to see if you think I have Lyme disease or not.

First off I have been diagnosed with Lyme now for 6 months, & I am uncertain to whether it's a correct diagnosis because I have don't think I have herxed.

It all began for me a year & a half ago when I was just moving out and beginning my life as an adult! I moved into a apartment & the 2nd day I woke up & felt Foggy/spaced out/slightly drunk. This wasn't the first time I had felt this way as I had felt this way in the past but it wasn't chronic. This time it was!

I had done all sorts of blood work and sleep studies & scans on my brain. NOTHING!

I just felt mentally off, almost like I hadn't slept in 3 or 4 days. I felt as if I was stoned! I couldn't get a diagnoses and this went on for a little while but I began to notice more and more problems! Over the course of a year & a half I noticed I had these symptoms.

1. Unrefreshing sleep, i wake up every single day dying to go back to sleep. I just never feel charged no matter how much I sleep. Sometimes it actually seems like I feel better if I get little sleep like a couple hours.

2. Fatigue- basically all day and gets worse when I eat something unhealthy, or if I stuff myself too much.

3. Daytime sleepiness- this usually hits me soon after waking up sometimes around 12 am. Sometimes it's worse then others. Sometimes I can fight through it other times I can barley keep my eyes open.

4. Mentally foggy or drunk- this is by far the most annoying symptom. My vision just isn't right it's like my vision is slightly drunk but my body isn't. I also can't remember words, memory loss, concentrating problems, learning problems. These mental prOblems are my biggest problem.

5. Constantly staring into space- I do this all day long. It's like my eyes & mind just zone out all day long & im left sitting there looking like a zombie. I just feel disconnected from life

6. Muscle twitching- usually happens when I lay down & is usually legs or arms.

7. Random pain- this pain is sometimes different and comes quick & leaves quick. It sometimes feels like a stinging pain and sometimes feels like a burning pain.

8. Insomnia

9 problem with dim lighting

10. Light sensitivity, the only thing my eyes are sensitive to is the sun! I can barley open my eyes at all.

11. Frequent urination, I pee alllllllll dayyyyyyyyyu longggggggggggg

12. Random testicular pain

13. Anxiety & social anxiety, fortunately I never had anxiety my whole life but unfortunately i have it now and it's awful!!! I get anxiety talking to people I have known my whole life or I overthink what I'm gonna say to people. Basically anything I don't do on a daily basis I get anxiety about now.

14. Depression & suicidal thoughts. This is quite scary.

15. Irritability, best way to put it in very hateful and I hate what my life has been the last couple of years.

16. Stay hotter then everybody else. I also notice I sweat very easy but don't wake up sweating or anything. Just any physical activity I sweat.

17. Not feeling like myself- I don't know if you could call this a symptom but I really feel like a different person. I'm the total opposite that I use to be and I hate it. I want my life back.

18. Unorganized- I feel like I constant loose stuff and things are always going bad for me. I'm constantly losing my wallet or forgetting something. In this 2 years I have lost 2 wallets. I also notice if I go to Walmart or something I have a hard time finding what I'm looking for.

19. Unmotivated

20. Poor circulation

21. Eating binges & weight gain

22. Crawling sensations

23. Low testosterone, I'm 21 years old!!!!!!!!

24 low vitamin D

25 low fsh hormone
Sooo as you can see I have my hands full. Lol

Also my western blot came back negative with only one band positive, band 23 igg which my doctor said only Lyme disease could cause.

My reasoning for doubting my diagnoses is because I don't herx. All I notice is some days I feel better then others. Some days I feel decent energy wise and other days I'm glued to the couch and depressed and hopeless. This isn't herxing is it?

I'm really hoping the Lyme community can help me figure this out. Thank you all for being here.

Post Edited (LLLLX) : 7/14/2018 10:47:37 PM (GMT-6)

2
Hi LLLX - welcome!

Your symptoms are ones that lyme and co's can cause.

Band 23 on the WB is lyme 'specific' - your Dr. is right.
You said you don't herx?

Are you currently treating lyme disease? If not, then that explains why you're not herxing.

If you would like to see a LLMD for an evaluation, we can help you find one. Start a new thread: "Looking for LLMD in/near_____" and fill in the blank with your location.

We encourage our new members to look through the information contained in the "New to Lyme?..Start Here!" thread - that sits at the top of the page.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
3
Herxing for me has always been like a cup of water. You feel fine until it reaches the overflow point and then it's bad. And some people don't herx. You got a positive. Go with that. So sorry. Hit it with everything you got. Good luck.
*43 yo - Treatment started Nov. 2016 - Bitten by mosquito in Paris 2013
* SIBO (improved with diet)
* Candida (improved with diet and Nystatin)
* Lyme - Babesia - Bartonella
* Hashimoto's (improved with NatureThroid)
* EBV
* HHV6
* Tinea Versicolor (improved with Sporanox)
* IBS (improved with diet and BPC 157)
* Infusio Jan. 2018 (http://www.kristensimental.com/lyme-hub/)
4
Yes I'm treating Lyme & I don't think I'm herxing. I've had 3 or 4 good days this whole journey & on those days I feel more alive. I have felt more energized! But the rest I just feel tired, unmotivated, & kinda depressed, & exhausted . This doesn't sound like your typical herxing does it? I don't feel awful, I just feel like I don't want to do anything.

Post Edited (LLLLX) : 7/15/2018 10:49:59 AM (GMT-6)

5
I would recommend you also be evaluated for CIRS that is caused by biotoxin exposure, especially with an HLA-DR genetic susceptibility. Look for a doctor certified in the Shoemaker protocol for CIRS, who will do all the proper testing.

/www.survivingmold.com/diagnosis/lab-tests

Some LLMDs know about mold and treat it, but they don't all follow Shoemaker. I would recommend a Shoemaker certified practitioner do the testing, diagnosis, treatment, and patient education for that.

Some, if not many, with Lyme have CIRS either knowingly or unknowingly. Lyme/co treatment doesn't fix CIRS.
6
Walkingbyfaith, my doctor said something about possible mold. She even tried me on cholestyramine for a couple of weeks. I didn't notice anything when taking this sk do you think that would cancel that out? Or do I need to look into it further?
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LLLLX said...
Walkingbyfaith, my doctor said something about possible mold. She even tried me on cholestyramine for a couple of weeks. I didn't notice anything when taking this sk do you think that would cancel that out? Or do I need to look into it further?


Look into it further. Try to find a Shoemaker certified practitioner. If there isn't one, see if you can at least find someone who really follows his protocol.

Cholestyramine is used in the protocol, but diagnosis involves a battery of lab testing and treatment is multi-layered and involves much follow-up testing at specific points in treatment. Doctors who aren't certified or well educated by Shoemaker don't understand all that. CIRS is verified by lab data. It's not a clinical diagnosis.
8
Did you have CIRS? If you don't mind me asking. & how long did it take you to get better if so
9
Also, something I forgot to mention was my c4a was elevated, albumin/globulin was barley high, Abs Cd8-Cd57 lymphs is low, DHEA Sulfate is high, VEGF is borderline low.

Any help with this would be great
10
LLLLX said...
Also, something I forgot to mention was my c4a was elevated, albumin/globulin was barley high, Abs Cd8-Cd57 lymphs is low, DHEA Sulfate is high, VEGF is borderline low.

Any help with this would be great


Elevated C4a is one of the most important CIRS labs that indicates mold or CIRS from water damaged buildings. Low VEGF is also common with CIRS.

Were you tested for TGFBeta-1? Did you have the HLA-DR genetic test done?
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No I wasn't tested for it. & no I didn't

I'm not living in that apartment anymore & didn't recognize that I got better once leaving. Does that matter?
12
LLLLX said...
Did you have CIRS? If you don't mind me asking. & how long did it take you to get better if so


Yes, I have CIRS. I was not able to successfully complete the Shoemaker protocol due to inability to tolerate cholestyramine (made symptoms unbearably worse) and apparently still am not in a clean enough environment. After leaving the moldy environments, it took 7 months to feel like I had detoxed most of the mycotoxins from mold.

I was diagnosed with CIRS in Sep 2016. I left my house and workplace and moved in with a relative immediately. I had an ERMI test done on all 3 locations. I was being exposed to moderate amounts of mold at home and work. My relative's house had less mold, so I stayed there. I'm still there and currently my mother and I are looking to buy a new house.

We could not find anyone who would remediate our house the way CIRS patients need it to be done. Standard, run-of-the-mill remediation often makes the environment worse, as they often focus on "killing" the mold rather than removing it. If they do remove molded building materials, they often use leaky air scrubbers or do not use negative air pressure or proper containment and spread the mycotoxins, spores, and hyphae into the environment. Even if they do everything right, unless they understand CIRS remediation protocols, they won't remove the mycotoxins, microbial VOCs, and other inflammagens that are found in water damaged buildings after the remediation is done. That part is a whole other process.

Post Edited (WalkingbyFaith) : 7/15/2018 6:14:01 PM (GMT-6)

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My msh was within normal range.
14
When I took cholestyramine I didn't notice anything other then constipation. I took it for 2 weeks I'm pretty sure.
15
LLLLX said...
No I wasn't tested for it. & no I didn't

I'm not living in that apartment anymore & didn't recognize that I got better once leaving. Does that matter?


If your C4a is elevated, then your TGFBeta-1 probably is too. If they are still elevated after leaving that apartment, then you're still being exposed to mold somewhere. A Shoemaker certified physician will tell you to test your home and workplace or whatever place you spend a lot of time in. Treatment won't work and can make you sicker if you're still being exposed to mold or water damaged buildings.

The HLA-DR test will show if you have a genetic predisposition to biotoxins from mold, Lyme, or other sources. It's worth knowing, IMO. It is done through Labcorp. My insurance covered it.
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LLLLX said...
My msh was within normal range.


The lab's range or Shoemaker's range?

Shoemaker's range is 35-81. My lab's range started at 0.

MSH is a big deal. Without it, bad things happen. .

Check your labs against the link I posted above.

At baseline, my MSH was 19. In Feb 2017, it was <8. In Feb 2018, it was 13.
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The reference range is 0-100.00 & mine was 11.8
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LLLLX said...
The reference range is 0-100.00 & mine was 11.8


Your MSH is definitely low.
19
So what do I need to do? Can I discuss this with my Lyme doctor? She's big on mold. Or should I go to my family doctor & get more testing? & if so what kind of testing.

I really appreciate you for your help!
20
LLLLX said...
So what do I need to do? Can I discuss this with my Lyme doctor? She's big on mold. Or should I go to my family doctor & get more testing? & if so what kind of testing.

I really appreciate you for your help!


Talk to your LLMD. You could print out the page I linked with the list of labs. You can ask your doctor if he/she follows the Shoemaker protocol.

The most important thing and also the first step is making sure you are not currently being exposed to mold. Testing your home and workplace with the ERMI test from Mycometrics is the way to do that.

Google CIRS and read more about it. Another really helpful website dedicated to CIRS is www.biotoxinjourney.com. The blogger on that site has CIRS and was a patient of Dr. Shoemaker. He makes the science and practical guidelines for living with CIRS understandable. I don't know what i would have done without that resource.

If you have further questions about CIRS or mold in the future, just put one of those words in the title of the post. I'm on the forum most days. I'm not the only one with CIRS/mold. There are others. They may not be on the forum as often.