Can this be lyme?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/17/2018 6:19 PM (GMT -6)   
I've been struggling with health issues for over 5 years. I've been tested for most things, including lyme's disease(multiple times). There was a point in time where i stopped believing that it could be lyme's and focused on other things, but i guess i am back questioning.

I'll explain my full situation below, but basically i want to hear your opinions on whether you think it is lyme or something like anxiety (hyperstimulation)

Around 7 years ago i noticed a tick on me, it wasn't engorged but i believe it did byte me, this happened in kentucky. I also live in Virginia, so there could have been other ticks. Just over 5 years ago i got severe digestive issues, bloating, gas, pain etc. I went to the doctors, but they never found anything. I had that for about a year and i could manage it pretty well by changing my diet. Then everything else hit me. It started with severe twitching and chest pain, following a stressful time in my life. Over time more and more symptoms started, but at the same time some symptoms left, only to come back months later or even never. Here is the list

Current:

- Twitching (All over, constant)
- Migrating pain in body
- Muscle weakness
- Chest pain
- Fatigue
- Anxiety, with occasional panic attacks
- Digestive Discomfort
- Tinnitus(Ringing in ears)
- Occasional Headaches
- Shortness of breath

Past( Not currently active)

- Lightheadedness/Dizzyness
- Brain Fog
- Tremors
- Bloated
- Constipation
- Neck stiffness
- Esophageal Spasms
- Migraines (Ocular)

I also run a pretty low temperature constantly (Average 97.6) and my CD57 is remarkably low 13 right now.

Now the evidence against Lyme

I've tested negative for ELISA, negative for Western blot. Negative 3 times for iGenix western blot (only band 41 IGG positive)
I don't get fevers unless i have flu
I never get night sweats
I can generally exercise without feeling worse, it's almost like i have more energy and i'm less fatigued
I am definitely somewhat of a hypochondriac, i can remember believing I had terrible diseases even when i was young.
My symptoms seam to increase or worsen with stress or anxiety.


Thoughts would be appreciated

Post Edited (Garion) : 2/17/2018 6:20:39 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 2/18/2018 1:32 AM (GMT -6)   
Hi Garion - welcome to our community.

I'm sorry you've been dealing with this for over 5 years now with no answers.

The symptoms you describe are multi-systemic...which could indeed be lyme and co's.
Although the tick wasn't engorged...it could still have passed on the bacteria to you.
Many of us never even see a tick on us.


"I've tested negative for ELISA, negative for Western blot. Negative 3 times for iGenix western blot (only band 41 IGG positive)
I don't get fevers unless i have flu
I never get night sweats
I can generally exercise without feeling worse, it's almost like i have more energy and i'm less fatigued
I am definitely somewhat of a hypochondriac, i can remember believing I had terrible diseases even when i was young.
My symptoms seam to increase or worsen with stress or anxiety.
"


The testing is not accurate/reliable...so we can't count on negative results.

Not everyone with lyme gets fevers. (I never have)

Not everyone gets the sweats. (I did)

I can also exercise and not feel worse.

Even hypochondriacs get lyme disease.

My symptoms also increase with stress.


Here is a questionnaire you can do - see what you score.
Dr. Horowitz is a top Lyme Dr. - very experienced and knowledgeable.


lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

My advice is to schedule an appointment with a LLMD for an evaluation.
To find one, you can start a new thread titled: "Looking for LLMD in/near_____" and fill in the blank with your location.
Then enable your email (through 'my profile') so members can send you names privately. We don't post the names of our LLMD's on here (except for the ones who publicly advertise - like Dr. Horowitz) for their privacy/protection.

You can also contact me and I may have some options near you.

In the meantime, I encourage you to take a look through the information in the thread at the top of the page: "New to Lyme?..Start Here!" It's packed full of useful information.
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 2/19/2018 11:03 AM (GMT -6)   
I agree with Girlie, you would be wise to be evaluated by an LLMD.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 2/19/2018 1:16 PM (GMT -6)   
Could be lyme-if that comes back negative check dental and parasite. Check dental with a doc who check and find dental issues every week ( some lyme docs do) or a biological dds

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/19/2018 2:47 PM (GMT -6)   
Thanks for the responses. I've been seeing a Functional MD for about a year now, that's where i got the CD57, and Igenix western blot done. Not sure if they are considered LLMD's or not, so i might get a second opinion.

Already did the Horowitz questionaire, i score around 50 but i feel it is very subjective. On the old test that would be high probability of Lyme but i heard he changed it in his new book, so now i'm i a probable(second highest group).

Magoo2, i haven't looked into dental, but i've had extensive parasite tests done, nothing strange has been found.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 2/19/2018 3:42 PM (GMT -6)   
Yes, you are in that tricky gray area I have seen a lot of people (including myself). I knows it is super confusing to figure out what to do. Have you had any antibiotics for anything else in the last 5 years? If so, do you remember any response to the medication?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 2/19/2018 3:55 PM (GMT -6)   
You asked for opinions so here's mine. Yes, I think it sounds like Lyme AND probably bartonella and/or babesia. For some, these coinfections can cause more symptoms than the Lyme.


"I've been struggling with health issues for over 5 years. . . . Around 7 years ago i noticed a tick on me"

That's a no brainer IMO.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 2/19/2018 4:15 PM (GMT -6)   
"Even hypochondriacs get lyme disease."

Girlie,

That was priceless.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 2/19/2018 4:31 PM (GMT -6)   
WalkingbyFaith said...
"Even hypochondriacs get lyme disease."

Girlie,

That was priceless.


I hesitated to post it - because I thought it would look like I was saying Garion was a hypochondriac - but I’m not - just sayin’ if he is one - he still can get Lyme....
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 2/19/2018 4:35 PM (GMT -6)   
Current:

- Twitching (All over, constant)
- Migrating pain in body
- Muscle weakness
- Chest pain
- Fatigue
- Anxiety, with occasional panic attacks
- Digestive Discomfort
- Tinnitus(Ringing in ears)
- Occasional Headaches
- Shortness of breath

Past( Not currently active)

- Lightheadedness/Dizzyness
- Brain Fog
- Tremors
- Bloated
- Constipation
- Neck stiffness
- Esophageal Spasms
- Migraines (Ocular)


Your symptoms indicate a multi systemic disease - not many would cause all those symptoms.
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

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/22/2018 5:41 PM (GMT -6)   
I'm getting an ispot test next week. Even if that comes back negative i will probably try some herbals to see if i can produce a herx.

What should i be looking out for if i herx? Just a significantly worseting of symptoms, or fever, headaches etc?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 2/22/2018 6:11 PM (GMT -6)   
Garion said...
I'm getting an ispot test next week. Even if that comes back negative i will probably try some herbals to see if i can produce a herx.

What should i be looking out for if i herx? Just a significantly worseting of symptoms, or fever, headaches etc?


A worsening of current symptoms and/or new symptoms.


I've never yet had a fever or headache.

I usually get more nerve issues....and when I was on babs treatment an increase in my head pressure...
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

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 335
   Posted 2/22/2018 8:28 PM (GMT -6)   
IMO I don’t think you should rely on ‘getting a herx’ for diagnosis. However if you do herx, that would be a significant indicator. The problem is, some of us have never herxed, myself included. Also, from what I understand everybody herxes differently. Also, my understanding based on the books I’ve read are that herbals work much slower than antibiotics and are less likely to induce a herx.

I really think you should see an LLMD. Starting the herbals now is smart. Cleaning up your diet and doing exercise you can is smart too.

Its hard to explain in just a couple lines why most doctors rule out tick borne infections before the patient even walks in the door to their office, but it is true.

You really need to be evaluated by a good LLMD

My 3 cents lol

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 2/24/2018 11:20 AM (GMT -6)   
The thing is i'm not sure i fully trust LLMD's. How do i know i have found a good one instead of one who wants to milk me for money? I'm currently with a doctor who is lyme literate, they are not ruling it out, but can't confirm it either.

I just feel so lost in terms of diagnosis.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 2/24/2018 12:48 PM (GMT -6)   
Garion said...
The thing is i'm not sure i fully trust LLMD's. How do i know i have found a good one instead of one who wants to milk me for money? I'm currently with a doctor who is lyme literate, they are not ruling it out, but can't confirm it either.

I just feel so lost in terms of diagnosis.


Did you get a recommendation from other lyme patients who are seeing your LLMD?

You are getting tested again...so that may show something. Are you doing the Armin Labs testing?
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

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 3/9/2018 8:46 AM (GMT -6)   
Hi Girlie

I went to a Llmd near me, found them through the ilads website. She had good reviews online. She believes most of my symptoms point to Mycoplasma.

Once again, just weird. Can't really test for it. I am doing more testing though. CO infection test through Igenex, immunoblot IGM and IGG and also the igxspot. All through igenex. Costing a ton, but i would really like some confirmation before taking serious ABX for months.

This whole lyme situation with diagnosis and treatment is an absolute disaster.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 3/9/2018 11:22 AM (GMT -6)   
I totally understand you wanting a test to confirm the clinical diagnosis.

My husband tested after I was positive with Igenex. He got an IND for bands 31 and 41.
We decided to do the Epitope test to confirm band 31 is indeed lyme.
And it was.

We wanted it on paper that he also has lyme disease. Our PCP has been very supportive of my diagnosis and actually even before my diagnosis....and we want to give her testing results if we can to support the diagnosis...so she doesn't feel she's going out on a limb. (Just in case she gets hassled...at least she has the positive results )

It's different story if we have a known tick bite, bullseye rash and the Dr. sees this (or a photo of it) ...then paperwork isn't really necessary.
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

Post Edited (Girlie) : 3/9/2018 10:25:11 AM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 6:56 AM (GMT -6)
There are a total of 2,973,983 posts in 326,150 threads.
View Active Threads


Who's Online
This forum has 161229 registered members. Please welcome our newest member, Bryce64.
415 Guest(s), 10 Registered Member(s) are currently online.  Details
Jack@, John_TX, lorasplora, Lapis_29, Reltnie, torontolyme, tickbite666, Lwill351, jayce, P34