Thoughts on my symptoms?

Hello,

A month ago I was diagnosed with IBS, Tinnitus (both ears) and High Frequency Hearing loss (both ears). Now the past 2-3 weeks I have been having a lot of dizziness, sound sensitivity, tension headaches, stiff neck, and sometimes sore arms/lower back. The back of my head has has also been really sensitive. My doctor thinks I may have vertigo and maybe meneires but I haven't had the intense vertigo attacks common with meneires. Just lots of dizziness.

I also have a Lyme test referral from my doctor after asking for one but won't be able to get it done for a few days.

I was wondering what your thoughts were on my symptoms with the possibility of Lyme? I was sold on meneires disease but the tension headaches have been non stop and I'm reading those are a sign of Lyme and not Meneires.

I should note I have no signs of a rash or bite and have not been in wooded areas recently. I also haven't had a high temperature even though I have had random feelings of fever.

Any help would be greatly appreciated!

Post Edited (duder12) : 1/10/2018 7:17:52 PM (GMT-7)

duder12 said...
Hello,

A month ago I was diagnosed with IBS, Tinnitus and High Frequency Hearing loss. Now the past 2-3 weeks I have been having a lot of dizziness, sound sensitivity, tension headaches, stiff neck, and sometimes sore arms/lower back. The back of my head has has also been really sensitive. My doctor thinks I may have vertigo and maybe meneires but I haven't had the intense vertigo attacks common with meneires. Just lots of dizziness.

I also have a Lyme test referral from my doctor after asking for one but won't be able to get it done for a few days.

I was wondering what your thoughts were on my symptoms with the possibility of Lyme? I was sold on meneires disease but the tension headaches have been non stop and I'm reading those are a sign of Lyme and not Meneires.

I should note I have no signs of a rash or bite and have not been in wooded areas recently. I also haven't had a high temperature even though I have had random feelings of fever.

Any help would be greatly appreciated!

Hi duder - welcome to our community. Your symptoms could be Lyme disease - but the test may not show a positive...even if you do have it. Many false negatives with Lyme tests.
Also the testing facility that you are testing with may not be one of the better ones for Lyme.

Go ahead and test if it's covered by your insurance and see what it shows. You can share the results here and we can help interpret them.

If you get a negative test result - then I encourage you to do another test with Igenex Lab. They specialize in tickborne diseases.
You just call them and ask for a test kit and they send it.

HI and welcome to our forum,

You will find many knowledgeable and caring members here to help with questions and support.

We also have a "New to Lyme" start here thread at the top of the page.

It has important and helpful information on Lyme, detoxing, testing, symptoms and much more.

While you are waiting for testing it would be wise to start detoxing, building your immune system up and eating healthy(paleo, gluten free). These things all help with healing from these infections.

When you test with Igenix it would be good to test for co infections like Bartonella, Babesia, mycoplasma etc.

Ticks usually carry more than Lyme and many of us have co infections and parasites.

I hope you find answers soon to why you are having these symptoms.

I wish you the best of healing and take care, Jo

Duder, welcome.

Here are some written tests you can take. Keep them in your records so you can see how you were at this time.

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

/www.lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf

I had a lot of those symptoms with Lyme, or maybe a coinfection. Hope you find answers soon!

Unfortunately testing for tick borne infections is very poor. The tests cannot be relied upon alone.

Did you complete the questionaire PeteZa posted above? What score did you come up with?

How long have you been "sick"? What are the symptoms that bother you the most? Do the symptoms come and go at the same times or are they everpresent?

mm57553 said...
As Missouri has said, the test you took is horribly inaccurate. Even the CDC admits it only catches about 50% of cases. A Johns Hopkins study found that it only catches 30%.

Google Dr. Horowitz's Lyme Questionnaire and fill it out. I think it is a pretty good gauge of whether or not to pursue Lyme.

There are other, more accurate, tests for Lyme but most regular MDs don't use them. If you pursue Lyme as a cause of your symptoms, you'll need to seek out a Lyme Literate MD (LLMD).

My scores from the Dr. Horowitz's Lyme Questionnaire:
section 1: 53
section 2: 10
section 3: 6
section 4: 6

Total: 75

What do I do next? My physician said since my lymes came back negative that I shouldnt worry about lyme but even since then my body aches and pains have SIGNIFICANTLY worsened. I am almost stuck in the bed and even that hurts. I let my physician know but I will not be able to see him for a while.

I was thinking Meniere's + Fibro but after seeing my scores and responses here Lyme sounds very possible

If I need to order a Igenex Lab test. Which one do I order? I am confused by all the options and they are really spendy. Not sure if my insurance will cover.

Thanks for your help at this tough time.

Adam

Post Edited (duder12) : 1/10/2018 2:36:08 PM (GMT-7)

Your symptoms and score are about the same as was (and still) . But Dizzy first then ringing.

My test came back with only 2 positive bands but test was Negative overall. The more you read up the more you'll understand that the testing is not really there yet. I'm into this less than a month and have a totally different outlook.

So one of the ways to diagnose Lyme is to be sure you rule out other life threatening issues.

I too went down the Meniere's road but I know several people who had it.. it knocks you to the ground.

It took me 6 months and 13 doctors to come to my diagnosis. (I was lucky but also had a good PPO so I pounded the Specialist, and would go right down the line)

To me sounds like like you have Lyme's (or similar tick type infection) but there a few thing might want to rule out if you have not already.

Forget your standard ENT and get into seeing a Neurotologist. ENT's really don't go behind the eardrum

https://en.wikipedia.org/wiki/Neurotology

You may want to rule out Cholesteatoma, Acoustic Neuroma, or Vestibular Schwannoma Don;t worry all are correctable.

I have a Cholesteatoma and am holding off on Surgery until I recover more from Lyme's. My doc was smart enough to tell me my other symptoms could not come from this alone

Get a appoint from the best doc out there,, con your primary doc into a referral if needed. Being in Chicago I only go to Rush U or Northwestern U now for Specialist. Make sure you tell them it;s severely impacting your life., (Funny thing is the date you have the appoint seem to be your good days, so you have to push it and a good Neruot doc will order a side MRI/CT Temporal Scan.


Lyme bug like to go to injured areas and it picked on my ear for awhile.

However would not hurt to go through the "Read this First" section in the Forum and find a LLMD in your area.

You have work several angles at once or it all takes forever

Good Luck

Igenex - you want test 188 adn 189, total $210 and I don't know if it is insurance covered or not.

This would be for Lyme Western Blot (IgM and IgG).

You really sound like you have lyme and a regular doctor, a neurologist, rheumatologist and an infectious disease doctor are not sufficiently trained to know about lyme disease unless they have done extensive training in that field also.

You need a LLMD, Lyme Literate Medical Doctor, that has specifically learned about lyme.

However, there are herbalists that are not trained doctors and they are great. There are some naturopaths and functional medicine doctors that are great.

It is a search to find a doctor that is a good fit for you.

PeteZa said...
Igenex - you want test 188 adn 189, total $210 and I don't know if it is insurance covered or not.

This would be for Lyme Western Blot (IgM and IgG).

You really sound like you have lyme and a regular doctor, a neurologist, rheumatologist and an infectious disease doctor are not sufficiently trained to know about lyme disease unless they have done extensive training in that field also.

You need a LLMD, Lyme Literate Medical Doctor, that has specifically learned about lyme.

However, there are herbalists that are not trained doctors and they are great. There are some naturopaths and functional medicine doctors that are great.

It is a search to find a doctor that is a good fit for you.

Girlie said...
Igenex WB Igm and IgG is $250 now.

Call Igenex - they will send you a test kit.

Take the lab req to a Dr. - any Dr. (even a chiropractor can sign it)


Check off the Lyme WB IgM and IgG.

Get blood drawn and fedex the package to Igenex.
Do this on a Monday, or Tuesday so it gets to Igenex before the week-end when they are closed.

I ordered the igenex test kit on faster shipping so hopefully it's here soon.

My muscle aches/pains went away for 2.5 days except the neck pain and other symptoms but it was still a nice relief. Unfortunately they then came right back on pretty strong again.

Also, newest symptom I now have is I constantly wake up throughout the night.

Not sure if it coming and going is any signs of anything.

Post Edited (duder12) : 1/14/2018 10:46:03 AM (GMT-7)

The other option is to get to a LLMD and see what they think of your tests and symptoms. As has been said, testing is not accurate enough to say a person does not have these infections with symptoms you are describing. So, it comes down to if you really feel you need a positive test or not. If you do, for insurance purposes or something, then the LLMD should be able to help you find ways to see if you can get a positive test (it's a matter of stimulating the immune system enough to produce antibodies) - but be warned, not every person's body can produce those antibodies until after they have had at least some treatments. For me, it took a full 12 months of treatments before I had a CDC positive Lyme test.

duder12 said...

Traveler said...
The other option is to get to a LLMD and see what they think of your tests and symptoms. As has been said, testing is not accurate enough to say a person does not have these infections with symptoms you are describing. So, it comes down to if you really feel you need a positive test or not. If you do, for insurance purposes or something, then the LLMD should be able to help you find ways to see if you can get a positive test (it's a matter of stimulating the immune system enough to produce antibodies) - but be warned, not every person's body can produce those antibodies until after they have had at least some treatments. For me, it took a full 12 months of treatments before I had a CDC positive Lyme test.

I just want to find out what's wrong with me. I can't treat it if I don't know what my issue is. Right now I have no idea if I have meneires, fibro, Lyme or what.

According to other members it would be a good idea to try the igenex tests even though I was just tested by my clinic.

If that's not worth it I would like to know because im not sure if insurance will pay for it. But if there's is some confidence in the test that the test can show different results than a standard clinic test than I am certainly willing to try it. I am looking into the idea of a llmd as well but just taking one thing at a time since my primary care is telling me not to worry about Lyme.

You can post those results here..and we can help you determine if it looks like you do have lyme.

Thanks for everyones feedback so far.

It's up to you whether you want to test or not. Some LLMD's will want a test even though they should be diagnosing you clinically...and using tests for back up.


You could make an appt. with a LLMD. make the appointment for 5 weeks out. In the meantime, you could test with the Igenex test ($250) - LymeWB IgM and IgG.
When results are back (3-4 weeks) - then take those results to the LLMD.

Some LLMD's have wait lists of a few months.

Igenex lab specializes in testing for tick-borne diseases...it is better than the standard clinic/lab test.

Even if you don't get a positive results...there can be indications in the results (lyme specific bands) that show up ...and are useful to back up a clinical diagnosis.

I would suggest you call Igenex directly and ask:

Phone:
1-800.832.3200
1-650.424.1191