I'm new to this board and thought I would post about my current Lyme diagnosis.
I was recently diagnosed with Lyme, about 1 month ago, after 8 months of going from doctor to doctor, as many of you have done.
18 months ago I began to have overwhelming fatigue that just would not go away, I went to many doctors, had many tests and nothing except "possible" high mercury levels came up via an integrative doctor who did not test me for Lyme. I wasn't totally sold on that diagnosis but I did wind up having all my metal fillings replaced.
Miraculously, the fatigue started to get better, but in its place came something even worse.
I started to get strange very strong pressure sensations in my right sinus. I didn't think much of it at first until it became more chronic. It was accompanied by a pressure sensation throughout the right side of my head as well as a "click" that I kept feeling and hearing in my head and also an odd tingling, burning sensation in my head that I kept referring to as a "bleeding" sensation.
Plus, eye pressure, ear pressure, tinnitus, heat beat sensation in my ear, pressure on the bridge of my nose and on my forehead.
I also, at the same time, started having numbness in my left hand which everyone said was caused by an elbow injury (which I don't recall having).
Well, this led me to my GP, who said I had a sinus infection. I took 1 week of antibiotics and nothing improved.
This led me on a 7 month quest, going from ENT's to neurologists. I had blood studies done, I tested negative for Lyme (via mainstream testing).
I had a CT scan of my sinuses that revealed a tiny right sided polyp. I thought, "That's it!" Every ENT (and there were 6) said that was not causing the pressure.
I had an MRI which unfortunately showed I have a small benign tumor (meningioma) in the lower right side of my head. Ah ha! That must be it, I thought.
No, said 2 neurosurgeons, it is too small to be causing these symptoms and would not cause left sided numbness because it's on my cerebellum which controls the right side of my body, and supposedly these types of tumors are common, most always benign and often just incidental findings, and some people have them and never know it.
So, at this point I know I have a right sided sinus polyp, a right sided brain tumor, but everyone is telling me this is not causing my symptoms.
Frustrating to say the least, and now that I know about my brain I am all the more upset.
I finally go to one last ENT, who suggests I see an integrative ENT that he knows who does myofascial release therapy.
I see him and he suggests maybe I have Lyme.
I send my blood off to Igenex and lo and behold it comes back positive for Lyme.
Truthfully, I am dubious, and shocked.
He puts me on Doxycycline which I've been on for 1 month.
I feel no better at all.
So, I guess my question is this. Does anyone have crazy one sided or 2 sided head and or sinus pressure as their main symptom, or both, as well as this crazy neck clicking/cracking, and internal head clicking?
I've also developed right sided eye problems, like watery, tearing eye, but only the right side. I wake up with a crusty right eye.
I've also noticed tiny pink and white bumps all over my skin (not petechiae), but just not smooth skin.
Does anyone doubt their Lyme diagnosis? I have read Igenex has a great reputation as well as a dubious one (false positives).
Right now, I am doubting but I don't know what else to do at this point.
I don't know what my Igenex test said specifically (I wouldn't understand it anyway) but I did have several "bands" that implied Lyme.
It makes sense in terms of the fatigue I had prior, and I have heard of creaking/clicking, and head pressure, but I never had flu-like symptoms, I never had a tick bite I can remember.
But, I am miserable, the pressure is relentless, I can barely put my head on the pillow at night it's so bad and nothing helps, not anti-inflammatories, ice, herbs, nothing.
I'm glad to have found this board, I hope someone has at least a bit of advice for me.
All would be appreciated.
I know most people stay on antibiotics for months but I'm just feeling impatient and doubtful about this whole thing.
Thanks for listening to my long winded explanation.
I have awful head pressure, (sometimes also in my neck and ears) and like you saw many ENTs. They thought rhinitis...nasal spray did not help. 8 months later I have come across lyme.
I am igenex negative which can happen with lyme however I am seeing a great doctor who is fairly certain this is lyme. At 25 years old and being tested for everything else he finds it hard to believe this is anything else.
Yes, at first I too doubted my diagnosis. My LLMD says it will take 2-3 months for the head pressure to dissipate. So hang in there! Some symptoms will go away before others and in general the road to recovery is long with lyme!
Glad you are on your way to health. Might I also recommend finding an LLMD in your area.
You sound just like me two years ago. For 8 months I went from doctor to doctor, specialist to specialist and was hospitalized twice for a duration of two weeks each time.
many, many tests were done, but nothing came up. I had an mri and a lesion showed up in my brainstem. I went to see a neurosurgeon/oncologist to rule out cancer.
It was very scary stuff. I got no answers from all those specialists and it was frustrating. I thought they were all wrong or missing something.
I had fatique too, joint pain, then severe neck pain and what followed was what sent me from doctor to doctor.
It started out with a liquid feeling rolling around in my head, tinitis, eyes were blurry and sticky with discharge. The came the head pressure.
I had head pressure top, back, base of skull, and temples. I had pressure behind my eyes, behind my nose, in my ears, in my throat. My neck cracked.
I had burning, tingling sensations inside my head too. I had burning sensations down my arms and hands, in the back of my head and down my spine.
The side and back of my head hurt so bad I had to sleep with side of my jaw on a pillow. I also had jabbing, stabbing pains inside my head, ears, and sometimes behind my eyes.
I had pressure down on my neck, shoulders, chest, and back too. I thought I was dying and no doctor was going to help me because they either didn't believe me, didn't care, didn't know their stuff or were missing something.
I followed the advice of a friend and got a lyme test out of state (PA) and found a LLMD doctor to do it. She tested me for lyme and it came back positive. I didn't believe it either!
Then, I started antibiotic treatment and nothing happened for a month or so, but symptoms started clearing up a little bit at a time.
Now, two years later I do have symptoms of head pressure, sometimes eye pressure, right ear pressure, and tinitis, neck pain, throat pressure, joint pain but to a much lesser degree. I am able to function now.
I assure you I couldn't function at all before. I laid on the couch constantly. I was fatiqued, in pain, and depressed.
My advice to you is to stay on the medication, give it a chance to see if some symptoms clear up, but don't stop checking into that tumor. You have a tumor and you have lyme too.
If I were you, I would look for a second opinion specifically a neurosurgeon who specializes in oncology too. Even benign tumors can cause problems like hydrocephalus.
you posted in the right area so i'll not answer your pm too ok.
wow, thank you for the wonderfully detailed health history above; and you split it up wonderfully for neuros like myself!
yes, please post in LLMD REQUEST FORUM, on the lyme home page; 1st forum; shown in my welcome letter i sent you before you posted too.
also post ALL POSITIVES & INDETERMINED NUMBERS FROM WESTERN BLOT IGM/IGG FROM IGENEX; we'll help you decipher them. but dr. c's explanation of western blot is where we get answers too; it's in my welcome letter to you. thanks lauren
i've never had the head pressure, so i'll let others guide you on that. i'll check my personal files to see if there is anything in them.
please check LYME FACTS & MEDICAL/TREATMENTS too ok.
here's the quickest way of finding any files online here:
go to upper right hand corner, and type in a short comments of what you are looking for,
example head pressure in lyme board click search
go past the ads; look at all posts shown, which will be from ALL MDJ boards; not just lyme.
i use this daily; what a timesaver for all of us.
PATIENCE ... lyme disease will teach you this; i didn't have this either, but you learn quickly just because YOU want things to happen FAST; THEY DON'T! it took many of us years/decades for me to get this way.
you need to remain on antibiotics for now; your new llmd will advise you accordingly; so listen to them, put your faith 100% into THEM! and learn all you can.
doxy; i'll include below my info on doxy ... eyes/sun sensitivities.
Betty's ROLL CALL of MEMBERS WITH EXTREME SENSITIVITIVITIES TO LIGHTS, SOUNDS/NOISE, AND CHEMICAL SENSITIVITIES
EYE SENSITIVITIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
You will need 2% amber and 10% amber ... Style no. 901 and 910.
1-800-521-9746 TOLL- FREE, ONE YEAR GUARANTEE!
mention you have lyme and marshall protocol, they will give you 10% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service? I'VE NOT had to return broken/scratched lenses!!
In fact, I have a terrible time where they drop to the floor, and 1 of bows will break off the connecting PLASTIC piece connecting to the lense itself. They just take the info over the phone from YOUR STATE'S REP!
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be.
Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.
DRUGS ASSOCIATED WITH LIGHT SENSITIVITY by Minoucat
I had inflammation and eye problems from Lyme... from which I was declared to be legally blind due to the damage caused. May I suggest?
Rather than waiting to do steroids for the inflammation from uveitis, etc... and ONLY because you can't find anyone right now...
This is what I did which worked VERY well for me... recommended by one of my docs.
Wobenzyme- 3 per day
Querectin- as directed on bottle- max dose
Bromelain- as directed on bottle- max dose
Vitamin E- max dose recommended on bottle.
I know.. that sounds too simple.. but it has wordked for me and others.
These supplements have anti-inflammatory properties and I was actually found to do better on them than the steroid drops they prescribed .. [doc thought I was doing the eye steroid drops when rechecking me several times].
My eyes cleared up faster than they would have on the steroid drops. I think I took this combo for about 6 weeks.
If I feel problems coming on... I start the protocol again.
I MUST say you need to check with a doctor before doing anything I am posting about... as I am NOT a doctor.
Hope this helps. tincup
There is also something that is called "Scheerer's phenomenon" or "blue field entoptic phenomenon".
This is basically the ability to see white blood cells traveling through in the squiggly capillaries of your retinas... especially when looking at a blue light. (like the sky)
When a leukocyte travels through.. it makes a wiggling motion. The link below is very interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"
I'm a very sick eye doc with Lyme, bartonella, and borelliosis.
Eye pressure up to 29 may be normal. Not a very good test for glaucoma.
Better to look for dammage to optic nerve (visual nerve) with dilated exam.
When in doubt, a threshold visual field test (painless but boring) can be done to detect early glaucoma.
Other reliable tests that can help pick up glaucoma include corneal pachymetry and gonioscopy.
I agree that optic neuritis is a much greater concern with Lyme than glaucoma, but of course the possibility of glaucoma still exists in everyone.
If you're quite concerned about glaucoma, easiest way to rule it out would be the visual field route. Maybe ask a glaucoma specialist for a second opinion.
FROM “MOLD WARRIORS” BOOK BY DR. RITCHIE SHOEMAKER, PG 48-49
The Judge was going blind in one eye in addition to typical MOLD illness. Several other workers were very ill.
They started on my treatment protocol right away, with prompt improvement in VCS scores and abatement of symptoms.
When the med was stopped and they continued to work in the building, relapse began within 36 hrs.
When they were retreated, they improved again.
Fortunately, the site investigation coincided with the time when I had the amazing HEIDELBERG RETINAL FLOWMETER in my office, on load from the manufacturer, Heidelberg Engineering.
Using Heidelberg's dual laser Doppler to measure blood flow to the eye, we could look at 3 tiny areas:
1. The retina;
2. the nerve tissue around the optic nerve (neutral rim);
3. and the deeper part of the optic nerve where the separation between the body and the brain is basically just one cell thick, also known as the LAMINA CRIBOSA.
Examining these sites reveals the effect of cytokines binding to their receptors in the capillaries; reduced blood flow, the marker of a biotoxin patient.
If VCS testing appeared to be low-tech, the Heidelberg was about as high tech as one could imagine.
I was able to show a clear deficit in capillary blood flow to the neutral rim of the optic nerve and the retina in the sick people, but healthy persons had normal capillary flow rates.
With treatment, flow rates increased beginning in 12-24 hours, making the sick people look like the healthy ones. With re-exposure without protective med, flow rates fell within 12 hrs.
So we had biomarkers to spare. The VCS scores matched the cytokine levels and both matched the Heidelberg flow rates, and all matched changes in symptoms, confirming both a decline in health following exposure and improvement in health with treatment.
Since the Heidelberg wasn't portable and the VCS was, and the results agreed, we could us VCS with confidence. To secure the diagnosis of SICK BUILDING SYNDROME, SBS, beyond any doubt, I still had to show that there were no possible variables of alternative (confounding) exposures 00 nothing else might cause a neurotoxic syndrome in these patients.
So far we had showed both the presence of neurotoxic effects and confirmed exposure to toxin-forming mold species. However those findings did not rule out Lyme disease or chronic fatigue syndrome; for example, or exposure to indoor mold from another remove source, as the cause of the illness.
Some patients might have multiple sources of fungal exposures or multiple contacts with biotoxins. Could they have PFIESTERIA or the new blue-––green terror algae making them ill, as well?
Pfiesteria – the estuarine toxin former that started my career in biotoxin illnesses. These dinoflagellates, from one of the oldest groups of leaving creatures, killed fish, and made people sick in the Pocomoke River in Maryland in 1997. When the State of Maryland said no one was made ill by Pfiesteria, my introduction to the APPEARANCE OF GOOD SCIENCE was initiated.
VCS test - VISUAL CONTRACT SENSITIVITY test -- neurotoxicological test that shows a distinctive group of deficits in biotoxin illness patients.
NOISE/SOUNDS …. MAGNESIUM by Carol in PA, 7.3.09
Supplement with magnesium to help hypersensitive hearing.
lauren, you accidentally got DUPLICATE posts; so i'm copying usmclyme's comment here so they can all be in 1 spot; i deleted your dup post. bettyg, leader
05/28/2010 08:39 PM Top
Sinus pressure and sore throats were one of my first lyme symptoms that I can remember, which came about a year after I was infected.
This was about 20 years ago though, and I haven't had those symptoms since then.
I also have that heartbeat sound in my ear sometimes. I have really bad pressure headaches when I walk up the stairs, or bend over.
I definitely don't doubt my lyme diagnosis!
It was found in my spinal fluid, and both my IgG and IgM tests came back positive. Plus my MRI shows large areas of white matter all over it, and my symptoms all add up perfectly.
I also sleep a lot, and I'm going to rest now. I hope you can get your treatment, Lauren. I hear it takes longer than a year even, to get better. Hang in there!
04/08/2012 08:10 AM
Posts: 75 Member
I had experienced the same symptoms and problems before diagnosis. You may need to be on more extensive antibiotics to fight your Lyme. I know it is hard to believe all of your symptoms come from Lyme but as you continue to read this website you will be amazed how complicated this disease can be for some of us.
04/08/2012 08:34 AM
Posts: 318 Member
I copied bjb's and edited out what I didn't get. The head pressure and nose polyp on right side are the same. I wonder if the nose polyp is related.
- fatique, joint pain, then severe neck pain, liquid feeling rolling around in my head, tinitus,head pressure.
- head pressure top, back, base of skull, and temples. I had pressure behind my eyes, My neck cracked.
- burning, tingling sensations inside my head too. I had burning sensations down my arms and hands, in the back of my head and down my spine.
- jabbing, stabbing pains inside my head, ears, and sometimes behind my eyes. (Insomnia)
Post edited by: runner64, at: 04/08/2012 08:43 AM
11/09/2013 09:29 PM
Posts: 5 New Member
Had the same problems as you. Seen many ENT's, neurologist, and neurosurgeons and no one can find the problem. Was tested last year for Lyme disease and the test can back negative. I live in Vero Beach, FL. Does anyone know any good doctors
11/10/2013 12:11 AM
Posts: 32296 VIP Member
leaders, please close this 3.5 yr. old thread; poster has been gone 3 yrs.
sent pm to tom above to post in llmd request forum.
Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.