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» LymeNet Flash » Questions and Discussion » Medical Questions » Those with or have treated sinus and neurological problems...need advice

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Author Topic: Those with or have treated sinus and neurological problems...need advice
nitsuj1225
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Is it possible for a nose swab test to come back negative and still have MRSA or Staph or some kind of infection in your sinuses?

I have been having sinus problems since my neurological symptoms started 2 years ago and I just have a feeling my issues are a result of some kind of sinus infection that never cleared up. My LLMD recently took a swab of my nose and tested for that stuff but it all came back negative.

Ever since I had a bad sinus infection 3 years ago, which I took antibiotics for but never seemed to really go away completely, I've had one side of my nose clogged for 75% of the day and every night.

Every doctor (ENT, GP, Neuro and even my LLMD) I've seen about it just says to rinse with a netti pot which I have done for months before and it never completely gets rid of my sinus problems which is why I think something else is going on up there. Even though when they look up my nose they ALL comment on how swollen the one side is.

Oh and I also have tinnitus, visual snow, floaters, constant head pressure, and developed occasional migraines with aura after my sinus issue which makes my vision worse each time I have one. My eyes have been examined thoroughly by multiple eye docs and are healthy. Had MRIs, CT Scans and a Spect Scan. Spect scan showed some lesions (consistent with a neuro infection) and the others came back showing nothing.

I believe everything is all connected because everything showed up after my initial sinus infection 3 years ago. Began with the sinus issues, which lead to my first migraine ever at the age of 22 (only 2 months after developing the sinus infection), which lead to the head pressure in the back of my head, lead to tinnitus, lead to visual snow and floaters.

I was bitten by a tick in my teens and I think the sinus problem was just the icing on the cake to compromise my immune system and bring out all these buggers I got from my tic bite. Which is why I don't think my immune system ever completely fought off the sinus infection.

I tested positive for Bart, Mycoplasma, FL1953, babesia. Lyme was a clinical diagnoses with inconclusive bands. I have been treated for a year and a half with oral antibiotics. I was doing well last summer and ever since my LLMD started reducing my antibiotics, it feels like I've been backsliding.

Therefore, I think my orals definitely hit something, but I either got off of them too soon or didn't take a high enough dosage to get them all, or both. I did test negative twice now for FL1953 since being on Tindamax for that.

I feel like this could be lingering or relapsing Bart since I have reactions with Bart meds (ie Biaxin) or it could be mycoplasma which I still have but has been reduced since beginning treatment. Or babesia since I get the chills a few days out of the month but no night sweats or fevers.

I know no one is an LLMD here but I just wanted to see if anyone had similar progression of symptoms or similar symptoms and what helped the neuro symptoms the most because thats all I have right now and honestly, if I could get rid of the vision issues and constant head pressure, I would probably feel 95%. I know, easier said than done.

I have an LLMD appointment on Saturday so I wanted to bring my doc some ideas that has helped people on here with similar symptoms.

I was looking into BEG Spray but you need a Rx for that...did anyone take that and help their sinus or neuro issues?

Are there any IM antibiotics that have helped anyone?

Also was thinking about going on IV antibiotics. Which one or combo helped the most for neuro issues? Rifampin and Levaquin seem to be the most popular. My doc seemed kind of reserved to put me on Levaquin when I brought it up to her last time due to the tendon issues you can develop but I'm sure she would if I pushed for it.

Sorry for the long rant and so many questions. If anything I just needed to get all that out of my system lol

I appreciate any feedback or suggestions though.

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poppy
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I had a sinus infection for years before lyme and still have it. They say most sinus infections are fungal and it seems mine is because antifungals seem to have the most effect on this problem. But you can't take them forever. Diflucan seemed to make the most difference; however it can hurt the liver. Fungal infections have as many tricks up their sleeves as lyme, IMO. They also come in multiple forms and can involve biofilms too.

Was interested that your MRI did not show this sinus infection, as mine did show it.

Not commenting on your other questions except to say that rifampin and levaquin are not done IV, which seemed to be what you are saying.

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nitsuj1225
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Sorry if I made a mistake on the names of the IV drugs...my memory isn't what it used to be.

Thanks for the input on being fungal. Which could explain why my initial round of antibiotics for the sinus infection when I had it didn't completely get rid of it.

I was just reading on a visual snow forum that many people on that forum that have the constant visual snow like I do also have sinus problems/tinnitus/occasional migraines/head pressure. Which makes me to believe that everything I'm experiencing is related somehow and it all started soon after my sinus infection.

Just trying to figure out what is still up there is the hard part and is very frustrating as I'm sure all of you know how I'm feeling.

But reading that other forum where people have no clue about Lyme and Co's and 90% of them have the same exact symptoms as I do, it was kind of like my eureka moment where everything I'm experiencing is related and all stemmed from the initial sinus infection (or most likely the initial tic bite then sinus infection). They all go the neurologist route and take antidepressants (which is the path I initially started with before I made the lyme connection myself) and has not helped their symptoms except for maybe one or two people.

I know a lot more people on this board have reported improved neuro symptoms after the right treatment.

I'm just trying to figure out what that right treatment is at this point. Which is why I'm asking if anyone had a similar onset of symptoms and what they did that finally helped those symptoms.

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Lymetoo
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Have you considered the possibility of your sinus issues being from candida/yeast (fungus)?

Do you eat dairy products? Sinus issues will almost always improve when dairy is removed from the diet.

check out this site:

www.knowthecause.com

Symptoms of Candida:
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/104816?#000000

--------------------
--Lymetutu--
Opinions, not medical advice!

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hopingandpraying
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Try Olive Leaf extract (Seagate brand). It's antibacterial, antiviral and antifungal.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030549;p=0

I am not affiliated with this product in any way, just trying to help.

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nitsuj1225
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I do not eat much dairy. I stick to rice milk and non-dairy cheese. The only dairy I have is plain greek yogurt for breakfast, mainly for the probiotic benefit. Maybe I should eliminate that also for a while and see how that goes? My LLMD did a food allergy test and I was mildly allergic to dairy and severely allergic to eggs (figures since I loved eggs) so I cut that stuff out a while ago.

I will try the Olive Leaf extract and see if I have any reactions to that. Seagate has an olive leaf extract nasal spray (how handy for my situation).

Thank you for the suggestions. Aside from Diflucan, there really isn't much else prescribed for yeast/candida/fungus is there?

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sillia
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Consider pulse irrigation instead of the neti pot. For me, the neti pot didn't seem to quite get the solution into the right place. My ENT (sinus surgery 15 years ago) got me started using this unit: http://www.hydromedonline.com/hp.html It's basically a WaterPik with a special nozzle. You can purchase it on Dr. Grossan's website, or from Amazon, or from NationalAllergy (that's where I purchased mine).

It makes a huge difference and I think for someone with serious issues is worth the investment.

I still use mine several times a week, even though I no longer have sinus problems. I think I'm able to avoid allergies and prevent infections by continuing to use this.

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nitsuj1225
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Looks pretty intense compared to a netti pot! Looks like people gave it rave reviews on Amazon. Definitely something to try...thanks for the info.

What have you put in it as a solution agent? I know there will be premixed packets of stuff but is there anything you have tried that works better when added with the packets?

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TF
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I got rid of lyme 8 years ago. However, in 2012 I had a sinus infection that did NOT show up on culture for 6 months!

It also did NOT show up on CTs of the sinuses.

Finally, after 6 months of being treated with various antibiotics, none of which worked, it showed up on a culture. In fact, 3 infections showed up and one of them was MRSA.

Once they showed up on a culture, then the lab told the doctor which meds would be effective against the infections that I had. That is the key! Now, we were not treating blindly.

That was how I finally got rid of my first ever sinus infection! All in all, I was sick about a year with it.

My first ENT didn't even think I had an infection in the sinuses since it wasn't showing up on anything. He scheduled me for balloon sinuplasty (they put a wire in each sinus and thread a balloon on the wire, then use the balloon to expand the sinus openings) to help me with the sinus headaches I had gotten for years the day before it was going to rain.

Well, lo and behold! When he got inside the sinus that I knew was the culprit, he said, "Oh-oh. This is full of pus!" I was awake during the procedure. Let me tell you, I felt vindicated!!

So, you can have a sinus infection and it not show on any tests. But, you will feel sick as long as you have it. It gave me a horrendous headache and great fatigue.

I also lost my sense of smell, which is a common symptom of a sinus infection. It was so nice to be able to smell things again after about 1 year of no sense of smell.

Also, a naturopath recommended by my lyme doctor told me to use the nasal squirt bottle and put a drop of Grapefruit Seed Extract in with the saline packet to kill any fungal infection that might be growing in the sinuses.

So, when you do your sinus rinse, add the GSE to kill fungus.

For the 6 months in which my 3 sinus infections didn't show up, I was given various antibiotics. They all helped me a little. Then, a week after stopping them, I would be back to my same miserable state. So, the key is finding out exactly what infection you have. Then, you aren't treating "blindly." You can use an antibiotic that is known to kill what you have.

Since they at least see swelling in one side of your nose, you may ask them to explore further.

Balloon sinuplasty can be done without sedation if you are not faint of heart. They will numb you and then insert the wire with camera to see what is going on there. It doesn't take long. The numbing takes longer than the procedure.

At least that way you would know what is going on in there once and for all.

To treat my sinus infections, I was given liquid antibiotics that I either breathed in using a nebulizer or that I put in the squirt bottle and squirted into the sinuses.

ENTs don't use the neti pot. You want the rinse solution to go into the sinuses with some force to try to get the medication to actually go into the sinuses where the trouble is.

Be sure you always use distilled water or boiled water to squirt into your sinuses. Otherwise, you can give yourself other infections from the tap water.

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nitsuj1225
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Thank you for your story. I will share this with my LLMD at my next visit. The culture is the nasal swab thing they stick up your nose correct? or is that something different? Because I had that done last month and it came back negative for 5 or 6 different things my LLMD tested for including MRSA and Staph.

Is it possible for the test to come back negative and still have an infection because obviously my nose is still swollen on the one side that I previously had an infection and has never been the same since so something is going on with it.

And since my neuro symptoms all began shortly after that sinus episode, I am 99% sure they are all related to whatever is going on in the left side of my nose.

A couple other things I forgot to mention...I get white clumpy mucous in the affected nose usually in the morning and also have almost continuous post nasal drip down my throat whenever I swallow for the past 3 years. And every time I lay down my sinuses fill up to the point I have to wear breathe right strips just to breathe at night and that still doesn't help sometimes. All of that screams some kind of sinus infection to me.

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TF
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Yes, the culture is the nasal swab they stick up your nose. They try to grow or view whatever germs are on the swab.

So, mine came back negative for everything for 6 months even though I was very sick with 3 infections. I had at least 3 negative swabs/cultures.

I believe this can happen because the swab can't get inside the sinus. It only swabs the sinus opening. If no germs are at the opening at the time of the swab, you get a negative culture.

You may have what is called chronic sinusitis. These sites tell the symptoms and the treatment:

http://www.mayoclinic.com/health/chronic-sinusitis/DS00232/DSECTION=symptoms

http://www.mayoclinic.com/health/chronic-sinusitis/DS00232/DSECTION=treatments-and-drugs

Once you have had such problems for a few months, it is time to go to an ear, nose and throat doctor (ENT). This is their specialty. They are better at doing the swabs and they know more about how to clear up these situations. They would go inside the sinus as I described above (balloon sinuplasty) if they think it is warranted.

You definitely need to see an ENT. They can look inside your nose with a special instrument (nasal endoscopy) and actually view what is going on in the sinuses using a strong light.

Here is a site that discusses the nasal endoscopy:

http://www.calsinus.com/otolaryngology_ent_ear_nose_and_throat/nasal_endoscopy/technology.php

However, this condition does not cause neurological symptoms that I know of. Perhaps the chronic sinus inflammation just wore down your immune system so the lyme disease went wild.

Just know that ENTs give steroids to squirt into the sinuses to reduce inflammation. These steroids are not supposed to go systemic (get into the body systems in general), but you would want to discuss with your lyme doctor if he thought you could safely do a course of these. (30 days of squirting it in your sinuses)

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Keebler
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-
Being totally gluten-free and totally dairy-free is the only thing that really helps my sinuses.

It makes a wonderful difference - in my case.

Other things can help and there are many variable for anyone but from my experience (and trying even the purest yogurt time after time) it's clear to me that dairy and gluten simply cannot come into my body. I've made peace with that for so glad for the improvement avoidance brings.

Some good articles here:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors;

GMO foods that destroy the GI Tract (and that includes all mucous membranes such as sinuses, too);

Hidden Sources of Gluten;

Dairy - see the NYT series by Mark Bittman.
- -

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Catgirl
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Many of your symptoms sound parasite related (I had many of your symptoms). And I also started out with what seemed like a massive sinus infection shortly after getting bit. Parasites were the missing link to my sinus issues and eye floaters.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Razzle
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If you test allergic to milk, then you should not eat dairy yogurt. There are alternative yogurts (coconut, goat, rice, soy).

Dairy proteins make mucus in the body in everyone, not just the allergic...so that's another reason to avoid dairy.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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nitsuj1225
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Catgirl - Funny you say that because I saw a Naturopath last night who uses muscle testing (first time seeing her). After she tested me she just sat back and said "you know you're dealing with parasites right?" So she put me on some parasite herbs and neuro herbs. Hopefully this will be the missing link I've needed.

Razzle - I tested for a "mild" milk allergy and my LLMD said I could eat it, just no more than one meal a day and don't combine dairy products together. Which is why I cut out all other dairy and just stuck with the Greek yogurt for the probiotics. But you are correct that I'm sure cutting all dairy should help a little more. I'll give it a try for a couple weeks and see how it goes.

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Linnada
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I'm about to have sinus surgery next week. I've been on a loooong journey with standard Lyme treatment, alternative treatment and finally higher levels of healing that have led me to what I hope is the ending point to my medical issues.

My symptoms started with sinus pressure and dizziness. I have seen many ENTs and many CAT scans which occasionally did show acute sinusitis. I was treated with antibiotics and re-scanned and they would always show up clear but I would feel as miserable as before. I believe what TF says, that Lyme will come out when your immune system is lowered from a chronic infection.

Actually, I had a pre-op CAT scan last week that was "clear" but I KNOW there still is something going on in my sinuses.

The higher levels of healing that I've been focusing on the past few months I believe have led me to this point where I can finally be well. I've definitely been on sort of a spiritual journey lately and if anyone wants more information about what I've been doing, just ask. I don't think its a coincidence that many doctors are now suggesting I have surgery. I was never given this option before, nor had I ever thought about it despite seeing many sinus specialists.

I used to scour things like lymenet and doctors protocols to find what was wrong with me and what to do about it. Sometimes I felt like I was beating my head against a wall. It's only been sinceI've been looking within myself that solutions have come effortlessly without me trying.

I know that last part sounds a little crazy but I feel in my heart that this is the answer for me, but maybe not for everyone. Wish me luck on the surgery!

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nitsuj1225
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Good luck and I hope it is the answer to your problems.

What have you done these past few months to get to this point?

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Linnada
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Family Constellation Therapy and Past-Life regression therapy (deep memory process) were the most important and amazing things I have done.

Also, reading these books started things off for me:
"Your Souls Plan" and "Your Souls Gift" by Robert Schwartz

I have to say that I was never a very religious or spiritual person but something inside me told me to give these things a try. I felt I had done everything I possibly could to heal on a physical level. I really felt like I had nothing to lose.

Those experiences were incredible and really opened my eyes t whole new world.

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lymeinhell
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Former sinus infection queen here. Just wanted to chime in that my story sounds like yours. What fixed my 'chronic sinusitis' was several months of Diflucan (that my LLMD put me on, not the ENT or Allergist I was also under the care of). Both the ENT and Allergist could not believe the difference in my sinuses in just a month. They were threatening to do the scraping surgery just prior... And both released me from care in about 3 mos after seeing the miraculous turnaround to healthy sinuses.

Also - because you mention bedtime congestion, make sure your house does not have mold hidden anywhere. And that your mattress and boxspring are clean and sealed in plastic.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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Linnada
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My doctor was treating me for a fungal sinus infection by using anti-fungal medications through a nebulizer. These are more effective than oral anti- fungals because they go directly to the sinuses and you can use them for long periods of time because they are not absorbed systemically.
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Tammy N.
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Don't forget about MARCoNS (multiple antibiotic resistant coagulase negative staph). According to Dr. S (the mold doc) you cannot get better if this infection is not addressed (and most people don't even know they have it).

There is only one lab that tests for it....I don't have that info with me right now, but you can probably get it from his site survivingmold.com.

The treatment is BEG nasal spray from Hopkington Drug.

Good luck.

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