posted
Apologies for a raft of newbie questions...
Over a year of being desperately ill. Been thru the usual fruitless investigations before figuring out that it could be LD. Problem is, to get treated seriously, I need more evidence. I mean, I only half believe it myself!
I'm waiting on Igenex results. But even my LLMD is unsure about the Lyme diagnosis, because I didn't have a rash, and don't have arthritic symptoms. (and because I once had a good response to a single dose of Diflucan, which makes them think it's fungal... although two subsequent doses did nothing for me).
I currently have: * Incredible fatigue - comes and goes though * Sudden overwhelming need to sit or lie down from time to time * Right-side abdominal pain, sometimes stabbing * Pain under right rib cage * Constipation & bloating * Swollen salivary glands * Swollen, sore tongue * Sleep disturbance & nightmares (haven't had a proper night's sleep in a year) * Clinically proven, but unexplained, adrenal dysfunction * Thyroid weirdness (tending to hypothyroid) * Dreadful, progressive hearing loss and tinnitus * Ear pain * Very noticeable floaters in right eye * Low body temp, slow resting heart rate (as low as 47bpm!) * Unexplained weight loss - lost 30lbs!
And I have had: * Swollen neck glands * Horribly blocked nose, flu-type illness * Bad response to alcohol * Low blood pressure, orthostatic hypotension (world would go technicolor when I stood up) * Paraesthsias in arms/hands on waking, often intense * "Swelling" type pain behind right eye, eye twitching * Pain keeping eyes open * Vision problems - couldn't get both eyes pointing in same direction, couldn't follow a line of text * Fine tremors in hands (often triggered by a hot bath) * Large-scale "myoclonic jerks" in the mornings * Unbelievably painful burning ears and tongue * Flashing pinpricks of light when I closed my eyes * "Sparklies" when looking at brightly-lit objects * Real difficulty concentrating on jobs * Splitting headache and photophobia that struck after 36hrs of Amoxicillin - put me in hospital for 24 hours. * Fatigue/nightmares/hearing loss symptoms really "exploded" a year ago when i was given a week of Doxycycline.
Strangely, most of this second list has cleared up without treatment. But most of the first list is still going strong. Hearing loss distressingly getting continually worse. I could survive everything else, but as a musician, losing my hearing for no good reason is killing me.
The really confusing part is how a lot of the symptoms get much worse overnight. In particular, I lose my hearing while I'm asleep, and wake in the middle of the night with really loud tinnitus. I can even get nightmares and hearing loss if I just nod off for an hour! It gets a bit better during the day, but my right ear is down all the time now. It also seems that the worse the abdo pain, and the worse the nightmares, the more hearing I will have lost in the morning.
Anyone else have this pattern of hearing loss in the mornings? Does it sound like Lyme to you? Or Lyme plus something else?
In case it's relevant, I was fine until an abdominal sports injury a year ago. Immediately developed incredible abdo pain out of all proportion to the injury. But there's nothing to see on any of my tests to find the source of the pain - and I've had them all except laparoscopy.
Any other diseases I should be investigating?
What abx would you suggest starting with for someone in my predicament? The chances of getting prescribed any heavy duty oral or IV abx are remote at this time. This is the UK after all. If I react to something like Doxy, perhaps that would be the evidence I need?
Sorry for all the questions, but it seemed to make sense to ask the people closest to the problem. Thanks in advance.
Posts: 19 | From London | Registered: Dec 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi pope, Yes, sounds familar in a lot of respects.
Have they sent tests for coinfections, as well?
Bartonella, Babesia, ehrlichia, etc?
A lot of things sound Bart like to me. GI problems, swollen glands, eye and ear problems... I know they can all cross over but those seemed to want to jump out at me.
I have a lot of the same symptoms, minus the hearing loss, just all the other ear weirdness. I have no medical background and someone more knowledge able will, no doubt, be along shortly.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I am not a doctor, but your symptoms can all indicate lyme disease.
Our symptoms always seem to be worse at night.
The most telling of your story was your reaction to amoxycillin! Sounds like you herxed...not a pleasant experience for any of us, and a sign that the meds were doing the job!
If your doctor is willing, perhaps he/she would consult one of our excellent lyme doctors here in the states.
Lyme disease is known as the "great imitator" and your doctor would know what else to test you for, should there be a need. When you get your igenex results you may want to post them here for opinions. Some doctors read these as negative when they are actually positive, with specific lyme bands showing positive.
Wishing you the best of luck. You might consider joining a Yahoo Group called Eurolyme. You will find others from the UK there.
Hope you'll stay around here, too. Lots of really smart people here...and very supportive.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
HI welcome to the board
I just wanted to add it is completely possible to have lyme and not have joint pain.
The symptoms present differently in everyone. I know two people who had it and did not have joint problems.
posted
I too have had many of your symptoms. I was also worse at the beginning, before diagnosis, and some symptoms went away before starting antibiotics.
Only after many negative tests for other things did I go to a lyme specialist. It's true, reacting to an antibiotic is a big clue and when you feel this happen you begin to realize, yes it must be lyme!
Posts: 82 | From east hampton ny | Registered: Jun 2006
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posted
Welcome Pope - Sure sounds familiar and very much like Lyme.
I didn't have a rash either and the arthritic symptoms are transient and came much later on.
I had most of the symptoms you have except my hearing was turned up too high instead of turned down.
My symptoms got worse every afternoon and continued until midnight. Then I would stay up very late and do all the things I couldn't do all day. The next morning I'd be back to the overwhelming fatique, can't stand up thing. At 4pm the rib pain/stabbing pains/pin pricks/bugs/vibrating/buzzing would start up again until midnight and then the cycle would repeat itself.
Lyme coming on after an injury/illness/trauma... is common. Your body may have been fighting Lyme for a long time and managing to keep it under control until an extra stress pushed it over the edge.
There's tons to read here on LymeNet. Start by working your way through the newbie links. Check out the symptom lists, descriptions of herxing...
I've been on antibiotics for 29 months. I'm continuing to make progress and am able to do most of the things I used to do. I can even exercise again!
The first month's of heavy duty antibiotics were the worst due to herxing. Each month after that I had a small amount of improvement. Fortunately lots of small improvements eventually add up to big improvement.
I'm sorry I didn't even read your whole post or responses. Way to worn out but.
There were 3 things I thought of with what I looked at:
1. Sounds like you have Bartonella with the Lyme by your symptoms and probably Babesia too.
2. Are you really sure you have a LLMD? (you said something about they were unsure about lyme with no rash and arthritis.
Many people don't get either!
3. Sounds like you need a tilt table test.
Just my thoughts, lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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bettyg
Unregistered
posted
Pope, OUTSTANDING job of posting detailed info here for us to assist you! KUDOS!
go to left hand side for support groups, and you can find EUROEUROPE, which I have heard is outstanding as well!
Yes, it sounds like lyme and/or co-infections. Glad to read you are waiting for IGENEX results!
I'll send you my 21 pages newbie links/advise Be sure to look the over 125 lyme symptoms list!
I suggest going to a hearing specialist. Hubby had hearing test and needed hearing aids. He got an infection and went to ear MD. Found out he had a broken ear drum so deaf in one ear, and never knew this for almost 65 years!!
Now read, read, read ....KNOWLEDGE IS POWER!
Post your IGENEX results too. Read Dr. C's explanation of them in links I've shown; it's what you will receive online too!
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posted
I have had most of the symtopms that you describe. Had major ear pain and hearing loss but not to the point of complete loss. Used to get bad pain in my ear drums and itching inside that I couldn't stop. Hearing mostly returned to normal after treatment. Still have the ringing though and probably always will.
My symptoms are worse in the morning and afternoon. Fatigue mostly now. Then about 4 in the afternoon I start to feel better and by 9 or 10 pm feel almost normal and can get a lot done that I couldn't do during the day.
A co-infection is a strong possibility. I made great progress treating the Lyme but whenever I stopped the abx I'd slip back. Then an excellent doctor I found had a hunch and tested me for Brucella. Its rare but it showed up strongly positive. Its symptoms are very similar to Lyme in that it can manifest itself all over the body. Its treatable but takes awhile.
Good luck in finding a correct diagnoses and keep checking here the people on this board are amazing and have helped me far beyond what words can convey.
Patrick
Posts: 142 | From Florida | Registered: Oct 2005
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posted
Thanks massively for all the info and encouragement.
To answer a few things:
* I did see an LLMD just before I flew home from the US. I was only in the US because I had got nowhere with British medicine after a year of very expensive consultations and investigations. I didn't get a whole lot further with top-of-the-line US medicine either (but I got a lot poorer).
The lyme thing was the breakthru, but it came right at the end of my three months there. Then it went a bit pear-shaped when said LLMD consulted with a boss/collegue (who's also an LLMD) and retracted the initial diagnosis.
Ended up getting prescribed nothing - grr - so now fighting to get prescribed anything by my GP here in the UK.
Sorry for bad wording, trying to avoid naming names.
* Hearing issues - as a professional audio engineer (well I was, can't hear properly now and too ill to work anyway) this was my biggest concern. So I've spent the last 12 months seeing countless hearing specialists, including some of the best in the world.
Most are completely baffled. Those that think they're not baffled have come up with a variety of diagnoses, from "neurotransmitter imbalance" (what? They put me on SSRIs for that, with no effect) to cochlear hydrops (which was then totally poo-poohed by a collegue from the same respected ear hospital) to migraine (which might, as it turns out, have been closest to the truth...).
* Gastroenterologists are equally baffled, the world over. Abdo pain. Food goes in, doesn't come out. Crazy weight loss.
Had every GI investigation imaginable... poked, prodded, blown into bags, tubes shoved in both ends, swallowed cameras/barium, had bits of small intestine pulled out of me twice (celiac tests), even had to have three sessions with a clinical psychologist because they thought it was "all in my mind".
Last two very-accomplished gastros (one UK, one US) have shrugged their shoulders and given up. They totally ran out of ideas.
All I can say is that it had better be Lyme, because otherwise I have nothing!
I'm asking about abx in another thread. Any help much appreciated. Thanks again.
Posts: 19 | From London | Registered: Dec 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Pope,
I don't know the total count on weight gain as opposed to weight loss...but either can happen with lyme.
It's either a thyroid gland iterferrance or hypothalmic CNS deviation to the ulnar nerve...
possibly even palsey of the stomach muscles...which gastros won't recognize as existing either...
I've been a vocalist in my lifetime with perfect pitch(or so I've been told)...
You can get that back....my ENT gave me a combo of I believe erythromycin/anti fungal drops in my ears to clear up swimmers ear...
Now I still get Tinnitis but don't have the hypo-audio or infectious clogging and pain in my ears...
on bad days I have in and out hearing and balance problems but not severe or long lasting...
I would bet my last bippy on the fact that you have lyme cheeky baby!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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