HELP!

Hello all,

I think I might have lyme disease, and am terrified. I am a 25 y/o girl living in Canada (quebec). All my life, i had to deal with anxiety and especially health anxiety. And chronic fatigue / lethargy.

I am asking your help to determine what concerns I have are valid and not just created by anxiety. Please note, that i had bariatric surgery 4 years ago and lost 130 lbs… which has a huge impact on a body.

It all started 1 year ago when i was in my last year of law school. I started getting confused/disoriented. Memory loss, trouble saying what I wanted to say. Trouble concentrating. I started to suspect I had a neurological disorder, so i went for blood tests, 2 MRI, a eeg and a neurological assessment (neuropsy test by a professional). ALL came back normal. I was referred to an endocrinologist and a pneumologist because they tought i maybe had sleep apnea. It was inconclusive (I even slept with a CPAP for 8 months without any changes in my sleep quality). Pneumologist tested for lyme but it was negative.

Then, last summer, with all of this going on, i had to stop working at a big law firm, because i was too tired and confused/disoriented (i starting getting lost in the office…) I felt like i had alzheimer…at 25.

Fast forward one year, I just passed the bar. It was super hard with all my symptoms, but still did it. And now i started working again and I feel like my symptoms are worse/coming back.

My symptoms are:
- Havent had my period for 100 days now (didn’t have my period for 1 year) - maybe due to stress/weight loss.
- Extreme confusion/disorientation
- fatigue/lethargy.
- I am always cold.
- Muscle weakness, weird muscle feeling, they feel ‘’heavy’’ and contracted.
- no energy
- wake up tired and it’s really hard to get out of bed.
- unable to concentrate.
- Poor blood circulation / tingling feeling in lower extremities.
- Hypoglycemia
- I sometimes wake up and my face is puffy / puffy eyelids.
- trouble spelling, change in vocabulary etc. EX: i want to say table, i say chair.

Horowitz test: 104.

I also think I my have hypothyroidism, because the symptoms seem to be the same.

I just feel like something is wrong, but unsure if its ‘’just’’ anxiety creating all of this.

I dont have an actual part of my body that ‘’hurts’’, no joint pain etc. I just have a hard time explaining my symptoms. And no doctor can help (and i can understand because of my anxiety and all the tests that came back negative). My doctors are actually amazing, but there is so much they can do. My psychiatrist says it’s hypochondria and it might just be. But there is a little voice in my head saying that its not normal to be so tired and have so many ‘’neurological’’ issues at my age.

What would you do? I know Lyme is super hard to diagnose. I also know that I have a past that makes it EVEN HARDER in my case because it could be something else (this could all be due to my weight loss surgery/anxiety).

I never had any tick or rash. Never actually been in a forest or anywhere that has ticks. The only thing i can think of is I passed 6 months in Europe while studying and maybe while I was travelling, I could have been to a place where ticks are present. But then again, unsure.

Thanks a lot.

Emilie

Hi Emilie, congrats on passing the bar, despite your symptoms! that must have been a lot of hard work!

Just wanted to say hi, and echo what Girlie said, the starting point is an Igenex lab test.

Please let us know how it goes! in addition to lyme (if you test positive for it) there are co-infections like babesia and bartonella typically present in the tick so if you test positive for Lyme you should also have the doctor evaluate co-infections.

No, "it's not in your head" or "due to anxiety". something is obviously wrong and you are taking the correct steps by listening to your body and feeling something isn't right.

many of us here have self diagnosed or come to the Lyme conclusion despite doctors telling us nothing was wrong. Igenex tests are the first step and key in validating your concerns!

please don't hesitate to ask us any questions! we are happy to help, although sometimes we are also fatigued

Caramba!

Don't listen to Doctors telling you its in you head!!

you scored 104 on Horowitz test and at the bottom it says:

If you scored 46 or more, you have a high probability of a tick-borne disorder and should see a health- care provider for further evaluation.

It doesn't say after that "or hypochondria" now does it?

There are many false negatives with the Igenex test.
BUT...a positive IS a positive. It will back up your symptoms.

If you don't have a Dr. to sign the test, then you could try a ND. I may have an option...if you email me. Not sure if it's close to you. The other thing you could do - is call ND Offices in your city and ask if they do Igenex testing for Lyme disease.

If you can spare the $210 for the Lyme western blot...then I hope you do it.

thanks everyone!

Hi Emilee!

Welcome!

You can be treated at any stage of Lyme. It will always be something you have, but you can put it in remission with treatment and diet adaptions.

Hi Emilee,

I went through the same thing as you and was just diagnosed last week. I never saw a tick or did I have the rash. I was just sick and did not feel right for a number of weeks running around from one doctor to the next and a couple of ER visits. Each time everyone telling me it was all in my head. Go figure! It is 2017 and Lyme disease has become an epidemic. I really feel doctor's should be informed and always test for it. Especially when all tests come back negative. Just like everyone advised you to do. I took the WB test but if your first test came back negative and have the money... if I were you, I would do the Igenex test to be completely sure. If that comes back negative then I would rule out Lyme disease.

Post Edited (chrisespo) : 6/25/2017 7:59:59 PM (GMT-6)

chrisespo said...
Hi Emilee,

I went through the same thing as you and was just diagnosed last week. I never saw a tick or did I have the rash. I was just sick and did not feel right for a number of weeks running around from one doctor to the next and a couple of ER visits. Each time everyone telling me it was all in my head. Go figure! It is 2017 and Lyme disease has become an epidemic. I really feel doctor's should be informed and always test for it. Especially when all tests come back negative. Just like everyone advised you to do. I took the WB test but if your first test came back negative and have the money... if I were you, I would do the Igenex test to be completely sure. If that comes back negative then I would rule out Lyme disease.

If Igenex comes back negative - that doesn't mean you do not have lyme disease. There are many, many false negatives. The WB relies on your immune system to mount a response. When we have Lyme disease, our immunity is suppressed some..and often won't produce a response.

Do not rule out lyme disease if it's negative. Often even though negative, there are lyme specific bands that will show positive.
And...Lyme disease should always be a clinical diagnosis with testing used as a back up.

Anxiety itself is a symptom of babesia! So it could be your own infections causing your anxiety!

Hi, I am new to this forum. I have been battling Lyme for 17 years. In Sept. I got a terrible viral infection, but since my MD (No I don't have a LLMD. None available in Tucson, AZ) so i have cytomegalovirus which they thought was Mono. then EBV. then CFS, then shingles. Come to find out I have no immunity to the Herpes Zoster virus at all. I'm taking a Biotics supplement call Livortrit plus, Licorice root, Astragalus, olive leaf and BHT and getting no relief from these symptoms. The headaches, sore throat, chills, fevers, body aches are worse than ever. I am doing detox baths, showers with EO, I just got off 8 weeks of antibiotics for 2 inner ear infections, sinus and upper respiratory. I am unfortunately off and on antibiotics for constant infections. So I am on a probiotic plus I drink Kieffer 3 times a day. I can't think of any thing else to do. Any ideas.

chrisespo said...
Most labs do the Western Blot.

This is from the Igenex website:

LP1 LYME PANEL #1** (previously Panel 4090-Basic Lyme Panel) Reg: $285.00; Savings: $28.50 $256.50
 Lyme IgG/IgM/IgA Screen IFA
 Lyme Western Blot IgG
 Lyme Western Blot IgM

LPA LYME PANEL A (previously Panel 5010-Initial Lyme Panel) Reg: $700.00; Savings: $210.00 $490.00
 Lyme Western Blot IgG
 Lyme Western Blot IgM
 Lyme PCR Serum
 Lyme PCR Whole Blood

Yes most labs do the WB - but Igenex is better than 'most' labs.
Some labs that are covered by insurance will do a screening such as the Elisa or IFA and if it's negative won't proceed with the WB.

The Lyme Panel's aren't necessary -
The WB Igm and Igg is $210.

From their website: (Individual test menu)

188 Lyme Western Blot IgM 866617 $105.00
189 Lyme Western Blot IgG 866617 $105.00

Hi Ems! Welcome to our community! I'm so glad you joined our community! I do agree that you should be tested again.

Also, do you have your last test results? Many doctors don't know how to read those tests, so maybe you could post the results and we could be of help.

Your symptoms definitely suggest Lyme disease and possibly other infections.

Thanks everyone! Does the fact that I might have gotten bit in Europe change the fact that I need to send it to Igenex? Or another lab in Europe?

Also, I live in Montreal, Quebec, Canada.

Ems - I emailed you last night - let me know if you didn't receive it.