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Lymes and Trigeminal Neuralgia

I am a 43 year old female living in Scotland.  During a trip to Rome in July 2006 I remember being bitten on the left of my face by a flying insect of some kind.  On my return to Scotland I went caravanning at a country park, (surrounded by woodland walks and river paths).  On 8th August I started getting a stiff neck and pain down my right arm and neck, along with headaches.  This lasted on and off for a few weeks and on 1st september I fainted at a concert.  There was no reason for this and I do not faint as a rule.

On 12th september I had my first bout to Tribeminal Neuralgia, (diagnosed later by GP) and this caused tingling and pain over the right side of my face.  On 12th October I had to be taken to A&E at our local hospital during the night to receive an injection for the pain.

Tingling and numbness have bee fairly constant since then down my face and just before my latest holiday to Spain, my osteopath spotted a rash on my back on 27 September 2007.  

The rash spread during the holiday and formed three main patches, two of which grew into each other.  Haviong carried out some research on the web, the rash is very very like Lymes.  i have no "bullseye rash" and test carrid by National Health Service came back negative.  My GP says she has never seen anything like this and I am now aiting for a referal to a dermatologist.  

During my research I cam across one article that seems to confirm Lymes and TGN are related and that LD can cause TGN as one of its symptoms.

Can anyone out there shed any light on this please?  i would like to build up more eveidence to take to my GP as I would like her to carry out more detailed tests for LD.Over the period from 2006, i have noticed that I am very toired ion the afternoons and often have to have a nap and again, this is not like me.  My memory has faded and I find great diufficulty in expressing myself correctly and sometimes just getting the words out is a problem.

Thanks for any help you can offer.
9 Responses
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Avatar universal
Hi, welcome to MedHelp Lyme.

Just a note to say that the person you sent a question to above posted that message 2 1/2 years ago, and I don't recognize the name, so you might not get a response.
Helpful - 0
Avatar universal
I am waiting for results from the blood test to show if I have lyme disease, but was just at the Mayo Clinic last week where they diagnosed me with trigeminal neuralgia and put me on Tegretol. While waiting to see if I have lyme, I'm taking antibiotics . . . symptoms include a rash over MOST of my body, my right side artificial knee was giving me terrific pain, the right foot was in tremendous pain and that was the one that had PTTD surgery . . .all the weakest points seem to be affected and I, too, feel lethargic!! I ran a 101.8 temp. last weekend that went away and returned as a low grade temp. Are any of you getting relief from the antibiotics and Lyme symptoms?? Judy
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Avatar universal
I was bit by tick in early June this year had a small rash that looked like heat rash...dismissed it as nothing.  At that time I did not know how prevelant lyme disease was in Virginia.  Around two weeks later I went on vacation and experienced worse ear pain ever...lasted about a day or two and faded.  Then around July 1st I started having nausea and head pressure.  Went to physician and they said they wanted to investigate nausea and I ended up at a GI specialist..before I got there the headaches began.  The worst ever.  I had never had a history of migranes or anything in my 43 years.  The pain was so intense and raidated through jaw and ear and behind the eyes and in my nose there was constant sharp shooting pains on most days.  This continued for most of August.  GI specialist ordered sinus xray...in two weeks I was told I had sinusitis.  Started on Azithromicin.  Things improved until I stopped taking it....then symptoms bad again.  Was given second antibiotic, Omnicef...got better then worse again.  It is now September 10th.  My neighbor comes over, who is a doctor for VA hospital, and informs me that she was in hosptial three days the previous week, and they were trying to figure out what had happened to her, she had had a mini stroke and an mri had some strange findings on it, finding that suggested LYME.  They did a test and she was positive.  I was mortified, I then remembered my tick bite, and immediately went to be tested.  I was positve on P41 IGM.  My doctor started me on doxy and I have been on since almost a month now and he plans to continue more.  I would say I am 70 percent better.  The pain has decreased but is still there slightly and numbness has started in hands, face, and legs.  This has been mild tingling and numbness...I just keep taking the doxy and thankful the pain is not as bad.  Three and a half months I went without knowing I was infected....Am I going to beat this?  I am praying that I will.  How much longer on antibiotics do you think I will need to be?  It has only been a few months for me.  If not for my neighbor I would not have been treated or even known I was infected.  My neighbor, thinks her mini stroke was not beause of her accidental finding of Lyme by a doctor and she is a doctor.  Yet she is going for a
lumbar puncture this week,  I ask her if they thought lyme was in her nervous system she said no thats not why they are doing it.  I think she is either not telling me whole story or she truly is a nut.  I think the two are directly connected.  She says she has no other symptoms of lyme...no pain and her stroke symptoms are gone.  She only did two weeks of doxy...two weeks!  Anyway I hope you are better and any advise you could give me would greatly help.  I seem to have a great doctor who is willing to keep on treating.  He said he treated someone with lyme that had it over a year for three months of antibiotics and they are fine.  That is all I really have to go on right now.  But I am scared, and I really just hate myself for not going to doctor right after tick bite and subjecting my family to my pain for so long before realizing what it was.  Thank you for listening.  

Kimberly from Virginia
Helpful - 0
625826 tn?1221893931
I had Lyme Disease in 1992. It was diagnosed and treated pretty rapidly because I found the tick and the patch. But even so, they did two tests, one which came back negative and one positive. I was sent to an infectious disease specialist, who did other tests that came back positive. By the time I saw the specialist, tho, I was already put on tetracylcine by my regular doc because I had started to show symptoms. A month later I came off tetra and got really ill. The specialist put me on Biaxin, which seemed to do the trick. I was symptom free for the next 6 or 7 years.

Then I started to have symptoms that nobody could figure out. I was diagnosed with everything from migraines to depression to multiple personality disorder (no kidding). In 2003, it was discovered that I had a staph infection in my eyes (mostly the right one) and a tooth infection in an upper right molar. I had a root canal done. Some relief from the terrible episodes. But a year or so later, I had the tooth removed because the episodes were increasing. I had more relief after that but still had recurrences.

Finally, I went to see an oral surgeon whom I knew because we had gone to him for removal of my daughter's wisdom teeth. After almost ten years of terrible pain and indescribable illness, having also been treated for most of 2005 on IV antibiotics (for pneumonia, sinus infections, etc.), the oral surgeon diagnosed TN and put me on neurotin, and I have been pain-free since (but for one instance when I was bitten by either a brown widow spider or a wolf spider and I got very ill), now going on 4-5 months.

The fact that I had Lyme (confirmed, but later a spinal tap showed no traces of it) and got TN confirms what others on this list are saying. Lyme is very sneaky and it can damage nerves and the blood-brain barrier, which can also open the door for MS or other nerve diseases, by the way.
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Avatar universal
I still recommend exploring lyme.  It can mimic lupus. Also some evidence that some flying insects may actually transmit lyme disease, but no real research into it to prove it as far as I am aware.  I didn't have a bullseye rash...but a rash that spead all over my body and was misdiagnosed as hives 11 years ago.
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Avatar universal
UPDATE - I have seena dermatologist privately, (NHS waiting time in our area is over 6 weeks!).  Professor seen is the head of dermatology at Ninewelss Hospital in Dundee, Scotland.  He has ruled out Lymes and thinks it is Lupus.  Myriad of blood tests being done and a biopsy taken from one of the affected areas on my back.  The rash is clearing away and doesn't apear to be leaving any scars so far. I had pictures taken opf my rash and Professor kept one for the file.  

I will update again when I have more news, but can already say that it is a bit opf a relief that a medical peron has actually said what he thinks it is.  It means I'm not imagining the tiredness or aches and pains.
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Avatar universal
Trisha,
If you live in Scotland, you may be interested in LymeNet Europe.
http://www.lymeneteurope.org/forum/

Carol
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Avatar universal
Hi,

I can't agree more with GeorgiaJane....lyme tests are unreliable, and lyme needs to be diagnosed clinically; but of course a doctor who is educated in Lyme is your best bet in order to get proper treatment.

I have Trigeminal Neuralgia,,,I also was diagnosed with MS. I am now in LD treatment., and TN is a very common symptom of LD...funny that it also affects those with MS. My MS doc prescribed a seizure med that didn't help me,,, my lyme doc on the other hand prescribes antibiotics and for the first time my TN is improving. The abx brings the TN back, but for shorter periods...this "revisiting of symptoms " is how we know we are getting better. Another words anytime I have a bout of TN it's less each time.. yeah!

Learn about LD and the Tick Borne Diseases that go with it. lymenetdotorg offers info and many there can offer their experiences.

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Avatar universal
I have had alot of the symptoms you have mentioned also and I was dx with neurological lyme. I have been sick since June. My lyme test came back neg. but positive for rocky mountain sppotted fever. What I am saying is that the tests are not reliable and your Dr. should dx you clinically. I have all of the tingling, chest pain, short of breath, severe pain in my face, etc... so many symptoms. The problem is that Dr.'s don't understand lyme very well and alot of times won't give you proper treatment that you need. to find a llmd(lyme literate medical doctor) go to www.lymenet.org and go to flas discussion, then seeking a doctor. Sign up on lymenet .org it is a very good site with alot of people with good info. I hope you feel better and get some of the answers you are seeking God Bless!

Jayne
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