Does this sound like Lyme?

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Blessedwithboys830
New Member


Date Joined Jan 2018
Total Posts : 1
   Posted 1/26/2018 11:45 PM (GMT -6)   
Hello all. I apologize for what newcomers prob ask all the time. Ok so I'm 32 years old and for the past 2/3 years my health has slowly started to change. I was once an energetic, fun loving mom. I have since become neurotic and feel like I'm trapped in a much older person's body and I'm not sure why it's happening. Here are my symptoms:

Joint pain, muscle pain, muscle weakness, shooting pains all over, flu-like symptoms, tail bone pain, nerve twitches all over, nerve pain, digestive issues- GERD, brain fog, weird vibration feeling in my brain, dizziness, fatigue, anxiety, depression, sensitivity to cold {easily cold and shiver all the time} & heat {when I'm too hot it just makes me feel yucky}, rib pain and also under my ribs, headaches, TMJ, ear pain, eye/ vision changes, sensitivity to light...

Does this sound familiar to anybody? I just want to figure this out, treat it and get better. My primary doc is giving me the run around and though my family is caring they also think it's in my head because I have developed health anxiety. I'm frustrated and don't know where to turn. I developed health anxiety because my once healthy became sick feeling over night. I would appreciate your feedback and your honesty.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 1/27/2018 3:32 AM (GMT -6)   
Hi, Blessedwithboys830:

Welcome to the forum. I'm sorry you've been unwell and are having a tough time getting some clarity.

As many conditions share overlapping symptoms, it's hard to say what's what. That said, your many symptoms are familiar to me and others on this forum.

The following link is a good place to start. It's a lot of information, but it will answer some of your immediate questions, as well as others that are sure to arise.

New to Lyme? Start Here!

You will always be able to find this article on the main forum page. It's pinned just above the top post.

Once you've read some of the above-mentioned article, feel free to come back and post additional questions.

I wish you the best,

The Dude

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33965
   Posted 1/27/2018 3:36 AM (GMT -6)   
Hi Blessedwithboys, welcome to our community.

No apologies necessary. We all were a newcomer at one time with questions and concerns.

In your list of symptoms - I have/had: joint pain, muscle pain, muscle weakness, shooting pains, tail bone pain, twitches, nerve pain, anxiety, depression, sensitivity to cold, rib pain.

I think this may be the first time I've read someone else having tail bone pain.

Do you have the tail bone pain all the time? Mine was kind of weird. I'd be sitting...and only feel it slightly...but then when I stood up...it was excruciating....and then as I walked...it would go away.

My tailbone pain went away with lyme/bartonella treatment.

Yes, you have health anxiety...because all of a sudden you have this onslaught of symptoms...I was the same...they came on very rapidly ....every week...a new one.

The good news - is you've found your way here...and we're going to help you. This forum has the best group of people - lots of knowledge and support.

I suggest you find a LLMD and schedule an appointment for an evaluation.
You might want to consider getting an Igenex Western Blot Igm and IgG done...and you can take those results to the LLMD appt.

Do you think your primary doc would sign a lab req to get tested?

You can call Igenex and order the test kit. Once the Dr. signs it, and you get the blood draw...you send it back to Igenex via Fedex. and approximately 3 weeks later you get the results.

/www.igenex.com

We can help you find a LLMD. Start a new thread titled: "Looking for LLMD in/near_____" and fill in the blank. (LLMD stands for Lyme Literate Dr.)

Then enable your email option (through 'my profile') so members can send you recommendations privately. we don't post the names of our LLMD"s on her for privacy reasons.

In addition to recommendations from members, you can also email me...and I will check my list and send you names if I have some in your location.
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

Eiren
Regular Member


Date Joined Aug 2017
Total Posts : 58
   Posted 1/27/2018 6:25 AM (GMT -6)   
Blessedwithboys830 said...


Joint pain, muscle pain, muscle weakness, shooting pains all over, flu-like symptoms, tail bone pain, nerve twitches all over, nerve pain, digestive issues- GERD, brain fog, weird vibration feeling in my brain, dizziness, fatigue, anxiety, depression, sensitivity to cold {easily cold and shiver all the time} & heat {when I'm too hot it just makes me feel yucky}, rib pain and also under my ribs, headaches, TMJ, ear pain, eye/ vision changes, sensitivity to light...


Yes, yes, yes, yes....

TMJ not so much, but the rest is yes.

I had EM and positive blood test, so yes, I have definitely had Lyme. So you could, too.

Stress and burnout are crap diagnosis. It's double hard to be a mom when you hurt all the time, sure, but I've been "resting" for months now, eating right, doing self-care, MIL does a lot of babysitting my kids, and whatever, and I still hurt all over.

You can check for Lyme, yes. See an LLMD. You can also go to your regular doctor and get as much as your insurance will cover to rule out other options - B12 deficiency, RA, EBV and so on. See if anything pops up, and go from there.

I don't think you're crazy.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 1/27/2018 8:15 AM (GMT -6)   
TMJ is common with lyme and I have it, maybe not so common like the other symptoms, but it can be.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/27/2018 11:53 AM (GMT -6)   
Hi Blessedwithboys,
Welcome to the community!

Count me in as someone that has had all of those symptoms and more. While I don't mention tail bone pain (as others have said, not many have that), I used to have it constantly, although nothing was ever structurally wrong.

I too would encourage you to follow up on this, and avoid a bunch of running around and see about getting in to see a LLMD (Lyme Literate MD) as they have chosen to educate themselves more deeply about these diseases.

I​f ​you haven't ​yet​,​​​​ it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as​​ ​​it is packed ​​full of ​​important information​​, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​​ ​​​​And, here's another good place to find helpful detoxing rout​​​​​​​​​​​​​​​​​​​​​​​​​​ines​​:​​​​​​ ​​www.tiredoflyme.com/detox-methods.html​


​​​​​​​​​​​​​​​​​​​For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will​​​​​​​​​​​​​​​​​​ need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​​​​​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​You ​​​​​​ ​​​​​​​​​​​​can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​​​​​​​You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & state)​​ ​​area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

​​ ​​​​​​​​​​​​​​​​​​​​​​Y​​ou can email ​​​​the​​ ​​​​​​Tick-Borne Disease Alliance at​: medicalinfo@tbdalliance.org
​​

​​ ​​​​​​​​​​ILADS has their own referral system as well:
​​​​​​​​​​​​​​​​ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.lymenet.org/BurrGuide200810.pdf
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2305
   Posted 1/27/2018 12:02 PM (GMT -6)   
Welcome and as you can see you are not alone. So glad you found us and I hope this is the beginning of healing for you.

Take care, Jo

gabybee
Regular Member


Date Joined Nov 2015
Total Posts : 207
   Posted 1/27/2018 1:21 PM (GMT -6)   
had most of your symptoms, many have resolved but the cognitive ones were my first to come and last to go
22 years old, symptoms started in 2013 and was diagnosed in 2015
HHV6/EBV
Lyme
Bartonella
MTHFR
ecoli+klebsiella
Candida

Treating with multiple vitamins + Supplements, Byron white formulas, and bee venom therapy.

Mark FW
Regular Member


Date Joined Dec 2017
Total Posts : 131
   Posted 1/27/2018 7:03 PM (GMT -6)   
I have 90% of these symptoms and a few not listed.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 1/27/2018 9:34 PM (GMT -6)   
It sounds like you have a Multisystemic infectious disease or MSIDs. Therefore you are experiencing body wide inflammation.

This can be caused by several different pathogens that exists on Earth.

Based on your symptoms the odds are the pathogens are those most associated with lyme. These pathogens are Borrelia, Bartonella, Babesia, Mycoplasma, Anaplasma, Rocky mountain spotted fever, and Ehrlichia.

You can take different test to try and find out which ones you have for piece of mind. But there's treatment protocols for each and many of the elements of those protocols cross over, allowing you the ability to treat multiple pathogenic infections at one time.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 1/27/2018 10:25 PM (GMT -6)   
Blessedwithboys830,

As a follow-on to what dacarte3 wrote about MSIDS, here's a brief video about it:

/youtu.be/SXxWxMuUh8w?t=5m17s

The Doctor in the video is Richard I. Horowitz, MD and I believe he coined the term "MSIDS." You can find other videos of him on YouTube. He also has some books on Amazon.com, if that becomes of interest.

Finally, if you want, you can complete his "MSIDS Questionnaire" for free on the following website:

www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

Take care,
The Dude

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 551
   Posted 1/28/2018 10:32 AM (GMT -6)   
I know of someone up in NH who has tail bone pain as a symptom (along with many others). Not sure if she injured it somehow before Lyme and company set up and it was attracted to that weakness.

jackinthebox
Regular Member


Date Joined Oct 2017
Total Posts : 69
   Posted 1/28/2018 11:32 AM (GMT -6)   
I had bad tailbone pain at first, still do occasionally, but very mild. As far as I know, it was Lyme, unless I happen to have hurt my back and started having Lyme symptoms on the same day.
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