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Pulsatile Tinnitus from Lyme?

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Posted 5/13/2019 8:57 PM (GMT 0)
I developed Pulsatile Tinnitus early this year, and have been dealing with it ever since. I have gone on a very strict diet, have been going to a nutritionalist, taking nutritional supplements, and gone cold turkey on caffeine. I am very sure I have lyme. I have done the DNA connexions urine test which came up negative for lyme or any co-infections.

However, I have many symptoms of lyme:
1. bone cracking in back of neck
2. hands shaking
3. twitching in the face area
4. Neck / shoulder stiffness
5. dull headaches in front portion
6. tingling sensation in head
7. ears very sensitive to noise
8. light sensitivity
9. Stomach issues (used to never have them)
10. joint stiffness
11. brain fog
12. pain in different parts of body
13. had sore spots on head
14. blood pressure issues (I'm thin and 50 and should not have BP issues)
15. wake up a lot at night

My biggest issue I am dealing with is the Pulsatile Tinnitus. It sounds like it's coming from the front portion of the left side of my head. The best way I can describe it is a chorus of crickets, then add in a high pitched ring, and everything pulses with my heartbeat. It gets louder in intensity at times, then other times it quiets down some. I'm concerned because if anything it seems like it has picked up some in intensity. I know another person on this forum said she got pulsatile tinnitus from her lyme and it went away once she started treatment. She described it as a whooshing sound when she laid her head on the pillow. Mine is constant, and is loud, whether I'm laying down, standing up or sitting, makes no difference. If I move my jaw to the left, it gets louder in my right ear, and vice versa. It affects me emotionally, and I almost panic if I think about having it the rest of my life. I believe I have lyme and I'm convinced lyme has caused this. I have an appointment with the lyme doctor in DC on the 20th and am praying for answers. Has anyone on this forum had similar to what I am describing from lyme and have you been able to kick it with treatments? Thank you.
Posted 5/13/2019 9:41 PM (GMT 0)
Hello, I have all of the symptoms that you have listed, I do also get tinnitus in my left ear but mine is more of a constant ocean like sound. This past fall I developed a round circular rash around a bug bite which was followed by symptoms like high blood pressure and insomnia so I went to a LLMD and she put me on three months of minocycline, what's weird is that while I was on the antibiotics my tinnitus went away amd since stopping them it has come back full force. I am really low on money right now so I no longer see my LLMD to ask her about why this would happen but it is curious. Like you all of my Lyme blood test have come back negative. I hope the Doctor that you will be seeing can help you. Keep us updated on how you are doing.
Posted 5/13/2019 9:46 PM (GMT 0)
I will definitely update in the future. Thank you for your response and I wish you the very best.
Posted 5/13/2019 9:50 PM (GMT 0)
1. bone cracking in back of neck
2. hands shaking
3. twitching in the face area
4. Neck / shoulder stiffness
5. dull headaches in front portion
6. tingling sensation in head
7. ears very sensitive to noise
8. light sensitivity
9. Stomach issues (used to never have them)
10. joint stiffness
11. brain fog
12. pain in different parts of body
13. had sore spots on head
14. blood pressure issues (I'm thin and 50 and should not have BP issues)
15. wake up a lot at night


I have or did have :

2, 3, 4, 6, 10, 11, 12, 13, 15

Also had pulsatile tinnitus - I’m the one who had the swooshing sound when my ear was on the pillow.

I no longer have 2, 3, 6, 10, 13, 15
Posted 5/13/2019 9:54 PM (GMT 0)
BTW - you are in good hands at the J Clinic.
What are the initials of the NP you’re scheduled to see?
(If you’re willing to share)
Posted 5/13/2019 9:57 PM (GMT 0)
I think you said you were going to Jemsek for 15 months now. Did they do any tests for lyme and did you actually have anything show up or did they just treat on symptoms. I'm concerned about that 15 month time frame and it sounds like your not totally back to 100%. I don't have any insurance and the figures I'm getting thrown at me on costs are horrendous. My son was told at Jemsek that it could be a 9-15 month protocol and likely back to 100% in 2 years. What is your outlook from Jemsek of when you will be through with their program and back to 100%?
Posted 5/13/2019 10:08 PM (GMT 0)
Hi bikernut,
I had the Pulsatile tinnitus it was on of my early symptoms. It did go away with treatment. So there is hope to get rid of it. I treated for Lyme, Babesia and Bartonella. Hang in there and I hope you get some relief soon.
Posted 5/13/2019 10:16 PM (GMT 0)

bikernut said...
I think you said you were going to Jemsek for 15 months now. Did they do any tests for lyme and did you actually have anything show up or did they just treat on symptoms. I'm concerned about that 15 month time frame and it sounds like your not totally back to 100%. I don't have any insurance and the figures I'm getting thrown at me on costs are horrendous. My son was told at Jemsek that it could be a 9-15 month protocol and likely back to 100% in 2 years. What is your outlook from Jemsek of when you will be through with their program and back to 100%?

I had already been tested and had a positive IgM WB from Igenex.

I am not symptom free yet.
I also treated prior to dr j with a LLND for over 2 years. This may have made the Babesia more resistant.

I am on a maintence protocol which dr j said it could be for 2-3 years.
But the cost is dramatically reduced as I only have appts twice a year now and abx are taken for 4 days per month only.
I am not 100% yet - but dr J is optimistic that I will be if I stay on the program.

I think 9-15 months to be 100% is very optimistic - lol

I think 15 months and then a maintenance protocol after is a reasonable estimate.

The appt costs aren’t so expensive after the first few.

We can’t really predict how long it will take for you everyone’s case is different.

Some people are treating for +5 years...
Posted 5/13/2019 10:20 PM (GMT 0)
So test results are used to back up a clinical diagnosis.
I don’t know what Dr J does -maybe he will have you test with Igenex
Posted 5/13/2019 10:50 PM (GMT 0)
very interesting, thank you for your response. I am confident in Dr J clinic. They are the best I know of. The NP that my son had his consultation with initials are CW. She was very professional and we liked her very much. I requested that she does mine on the 20th. Is that who you had?
Posted 5/14/2019 12:03 AM (GMT 0)
No, the NP I had for my initial consult has since left the clinic.

FYI the appt is 3 hours (or longer) long
Posted 5/14/2019 12:42 AM (GMT 0)
Yes, I know. They are very thorough. I'm looking forward to getting on something soon.
Posted 5/14/2019 1:48 PM (GMT 0)
I have had tinnintus and had have the swooshing sound in my left ear. My tinnitus gets bad after taking herbals or if I have alcohol. The swooshing went away months ago but the ringing is still present on and off.
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