Just wanted to post, not to complain but to get some re-assurance I am on the right track. Since August I have had optic neuritis, which came over night. Since then I have had burning sensations in my limbs, fasciculations, on/off arthritic pain that moves from place to place (mainly hips, knees, elbow). Over the period of a month things were getting better, including my eye. Then in September I started getting fevers every day, peaking in the afternoon and my optic neuritis started getting worse. Etc. Focusing problems in the other eye....
I went to a neurologist who is making me wait for an mri, he is stuck on MS even though most of my symptoms are not MS symptoms and the fevers seem to indicate some sort of infection.
I found a Lyme Dr. who sent me for igenex tests on Monday and started me on Ceftin 1000mg twice a day. Since I started the Ceftin I have been getting worse, low grade fever more and more often starting early in the day. My eye is getting so bad I am almost completely without vision. Now today I have a headache, stiff neck, fever (that wont go down with tylenol like it usually does) and I generally feel like crap. How do I know if this is a herx, I am so scared I am going to go blind and I dont know what to do. I have been on antibiotics for 6 days now. I am scared this latest bunch of symptoms is meningitis. Or everything getting worse.
I know this is some sort of infection, even the course the optic neuritis is taking is not typical of MS.
I am just afraid that this is not lyme but something else but I am not sure what else I can do I had to fight to find a doctor that would do lyme testing. I cant beleve the neurologist is not doing blood work for other viral or bacterial infections in the mean time while I am getting worse.
Could this latest change in symptoms be a herx? I have no idea how to differentiate between herxing and getting worse.
-Bob
[ 15. October 2005, 09:44 PM: Message edited by: bob_ffxi ]
Posts: 67 | From New Hampshire | Registered: Sep 2005
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You SHOULD call your Dr. however just to report the changes and get his advice. It is probably a herx. Hubby and I both herx on day 4 or so of any new med.
It is a long, bumpy road. Hang in there.
Wizard
Posts: 252 | From USA | Registered: Sep 2003
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Bob,
Feeling worse initially on abx is a dead giveaway for lyme. Almost every lymie experiences it. If the herx's are too bad, back off on the dosage a little and slowly ramp it up till it's tolerable. Too much herxing is counter productive. The keets die off in droves when the abx hits them, they release their toxins, thereby making you feel worse initially. Eventually, it gets better.
Drop that neurologist and have your LLMD do any testing. After treatment for a while, your ailments should start to clear.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Thanks for your responses, I guess I am second guessing everything since this is effecting my vision which is the most frightening thing of all for me. I will call my llmd and run all of this by him as soon as I can on Monday. I just didnt know what to do expecially since it is the weekend.
I am so glad I found this forum, knowing I can mention this stuff to someone other than my fiance, (who is just as lost and stressed as I am with all this) makes me feel much better. I have been trapped at home since this started in August and it is getting to me.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
Hi Bob, The symptoms you listed are my personal babesia symptoms that I take meds for as well as lyme meds...just a thought., kt
Posts: 740 | From BC Canada | Registered: Mar 2003
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My LLMD also ran a Babesia FISH test via Igenex on monday so hopefully the results will come back this week... I wasnt able to get the full co-infection panel though since just the lyme panel and the babs was $600 when prepaid, ouch! I hope my insurance reimburses me for the tests without too much of a problem. I am sure they are going to -love- me for the MRI, Evoked Potentials, prescription, tests and doctor bills from this month....
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Bob,
Word to the wise. Once you start treatment all kinds of odd symptoms can pop up. Ailments you never had before can arise. Old one's leave, or move around, new one's can start. Treatment is a bumpy road and you'll make numerous calls to your LLMD or post here for advice.
In time it all gets better. Keep us posted on your progress.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Don't forget Bartonella. Your symptoms crossover into all the co-infections, but most of those are my Bartonella symptoms.
The good news is that Bartonella can be treated with many of the same antibiotics that are used for Lyme treatment, however, you have to have an intracelluar agent like Rifampin.
It is hard to differentiate between a "herx" and just feeling worse. But, as I have been known to say.
Keep on, keepin' on
-Lyme Wolf
Posts: 63 | From Twin Cities, MN | Registered: Mar 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hi again bob-in my 18 yrs of dx and treatment i have learned to be very leary of neurologists and infectious disease docs-i did the shock tests twice...the first one terribly painful but neg results. the 2nd one i cried so much the doc -who had the personality of a rock--stopped before the test was over and in a huff said he couldn't "do this" anymore. again-lots of paain-no results. the spinal tap was the worst tho.
i still want you to answer me privately cuz i think you might want the names and #'s of real llmds-we should talk first-but gettin really good-treaqtment early can make a big difference so you don't want to fool around with someone who really doesn't treat the right way.
the other answers you got here are good. it gets worse before it gets better. talk to you soon.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I will be dumping the neuro for sure after I get my MRI, I just cant drop him now because then I would have to wait another month or two for an MRI appointment and I want to be sure it is not anything like a tumor or sinus mass that is making me lose my vision. MRIs have to be specially approved by my insurance company so I guess I can deal till it is performed.
The neuro's personalty drives me crazy. I wonder if he gets kickbacks from the drug companies or something, makes me angry when a doctor rules out everything but MS before running any blood tests, MRI, or any other tests for that matter...the guy specializes in neuro-oncology, I can just imagine what he tells his brain cancer patients....
obviously the guy is a duck... Maybe he is like one of those disease sniffing dogs and can diagnose just by my scent when entering his office, or maybe he has Madam Cleo under his desk, who knows lol
My LLMD is treating me right now with oral abx. We are just waiting for my Igenex test results to come back hoping for a positive to make getting a PICC and Rocephin approved by my Insurance company easier. He will persue the IV no matter what but it is better to wait for the results first because they could give us a lot more leverage.
I think I am just more anxious for some results because my vision is one of my most precious things and without it I can not do anything I love. I am a computer consultant, and I enjoy photography, etc. I had just gotten a new car right before this happened and now it is living in my garage since I can't drive right now... Then not being able to work is killing me... Pretty much the same frustrations everyone here is going through or has gone through. I am just having a hard time coping, this is supposed to be the "prime" of my life I never expected to get sick, especially overnight. But well I should at least be happy I am alive.
I have noticed that my arthritic and muscle pains have gone since I started antibiotics and my muscle twitching has reduced, if my eye would get better I would be very very happy. The rest of the symptoms are a lot easier to deal with!
I sent you a private message as well. I really hope you are feeling better. You seem to be having a much worse struggle than I can imagine, and I really appreciate you taking the time to respond to this.
One thing I am grateful for is the people on this board, I would be completely out of hope if I had not found this place.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thought I would bump this up as people were inquiring about Bob and maybe he will let us know how he is doing.
I am doing OK, still have vision problems that nobody seems to be able to figure out why or where they are coming from. And a constant "fever of unknown origin" My doctor added 400mg Doxy to the 2000mg Ceftin I am taking. I am still waiting for the Igenex tests to come back, they are backed up right now.
I had a bad day yesterday, the day after I started the doxy, so maybe that means something. And my fever is much lower than it "normally" is today, but it is way too soon to know if that is just a coincidence.
I have an MRI and LLMD visit on tuesday. I got some referrals from lymenet members to lyme knowledgable ophthalmologists in my area so I will be visiting with one soon.
Then to top everything off my foot muscles are STILL killing me after the Somatosensory Evoked Potentials.... I really think they did something seriously wrong and had the voltage cranked too high, I hope they did not damage my muscles
Thanks so much to all of you for your help, support and concern, it has really helped to know all of you are just a few keystokes away.
I'll keep you updated as soon as I have some answers.
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
Just wanted to pop in here and wish you all the best, Bob.
I never had any vision problems with lyme...but I had extremely painful feet...plantar fasciitis.
BUT, my grandson had some very scary vision stuff. We were all very concerned, as I'm sure you are. It took a diagnosis of lyme disease and a few months of treatment...but his vision now is perfect.
Good idea to have the opthamologist check it out. Everything you have mentioned sounds the Lyme bell! Welcome to the club. Patience and fortitude are needed to endure.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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I am glad to hea your grandsons vision improved, this gives me hope mine will as well. The eye symptoms are horrible I would never want anyone to have to go through this.
I am not sure but I think I just had a Herx. Yesterday I was really sick today I felt really nasty and my back got really hot between my shoulders like my spine was burning hot. It really was hot because my fianc� could feel the temperature difference.
When this burning feeling slowly went away I noticed my legs don't feel like they are there, this is because the weird burning/muscle pain I have had for the last 2.5 months appears to be gone. I can feel things in my legs it just very strange since I had become used to having that constant sensation. I don't know if the releif is only temporary but it makes me feel like I might be on the right track. Now if only my eyes would magically get better. It is really strange how fast this happened though.... It scared me at first because I thought they had lost all feeling I had to actually had to pinch my legs to be sure.. lol
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
bob-the mri will be more important than just ruling out tumor etc-some mris "suggest" lyme...also-remember that some docs may read this as ms.
pain in my feet was one of my most severe symptoms for a long time. IT DRAMATICALLY WENT AWAY WITH ABX! Hang in there. lp
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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The pain in my feet is not from Lyme, it is from the SSEP test when they shocked my foot, the muscles they stimulated have been very sore ever since. But I guess that is what 30 min of the most painful fasciculations imaginable will do. I will NEVER let them give me that test again....
Apparently the neurologist only bothered to get pre-approvel for the MRI and neglected to get approval for the VEP and SSEP tests even though I told them three times. I better not get charged for that.....
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi Bob,
I have been herxing on new abx; my cognitive sx improved amazingly, but then I got the classic joint pain, swelling, fever and chills, and flu aches. (Oh, joy! What a roller coaster ride!)
The vision stuff is scary. Overnight this weekend I discovered one eye was dilated way more than the other, and I had pressure behind that eye.
My univ. sent me to a hospital ER, they did a brain CT scan, which was normal, yay! But then they wanted to do a Lumbar Puncture. I said no way. First I'm talking to my LLMD and PCP! They let me go on several conditions.
My LLMD recommended a Lyme Literate ophthomologist in my area. I am definitely going to follow up w.them; I don't want to see the non LL neurologist the hospital wants me to see.
Did they want to do a LP on you?
I know what you mean ab. visual problems. It is our life to see -- I have been freaking out. The dilation prob. calmed down but I still feel the pressure.
My point is that when I am herxing, as I have been, and I was happy bec. I knew I was getting at the bugs, all sorts of weird symptoms can emerge. Ones you never had before. This is the first time anything visual has happened for me.
I am putting MUCH hope in the Lyme Literate Eye Dr. my LLMD is recommending.
My LLMD gave me permission to back off from the abx for a bit until this gets sorted out. (i.e. maybe it is too intense a Herx for your body to handle right now).
Find out if the antibiotics you are on can have side effects of building up intracranial pressure, which itself can affect the eyes. The technical term which sounds scary is pseudotumor cerebri. It just means pressure build-up. I think it *can* be a source of eye problems.
That is why they wanted to do the LP on me; but I am going to follow thru with the LL eye Dr. FIRST.
The good news is that I understand there are drugs that can help w. that pressure (including something called Diamox) --- so IF that is the reason for your vision problems, the pressure (and visual issues) can be helped.
But I am going to go to the LLMD Ophthomologist before I do ANYTHING else.
I hear ya. I'm with you - I got my first visual symptoms ever this weekend, and it is incredibly scary.
Hang on to the LL ophthomologist for a solution; check out the side effects of your abx; and ask your LLMD about cranial pressure affecting the eyes. If one of the abx side effects is a build up of cranial pressure, then just switching abx might improve everything.
I would pay attention to the stiff neck. Tell someone about that.
I haven't followed all of your messages - do you currently have a good Lyme Literate Doctor? He will know how to rule out these other things, too.
I'm not a doctor, so these are just my current ideas, and what I'm going through, too -- just wanted to give you some avenues of hope and let you know you are not alone.
Warmest good wishes. Posts: 1067 | From East Coast | Registered: Dec 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I had double and triple vision, lots of floaters, one eye dialated at a time, one eye roving - sort of wall-eyed. Severe redness around the eye - first one side and then the other - ointments didn't help;
but the worst was pressure behind my right eye to the point I thought my eye would pop out - severe headaches with that too.They thought I had giant cell arteritis for a while too.
All of that cleared up with antibiotic treatment. Lyme and halloween must be related.
posted
My doctor called igenex again, test results still are not in, and wont be till thursday at the soonest. My LLMD will be at a lyme conference so I wont find out till probably Tuesday..... Argh this waiting sucks!
-bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
Spent two hours today in the mri machine.... boy they make those openings small, felt like my nose was almost touching the other side of the tube, and the thing they use to secure your head to the table made me feel like Hannibal Lechter....
I glanced at the monitor on my way out, it appears I do have a brain!
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Just wanted to say that I get bad vision problems which mostly include big time floaters that travel thru my field of vision for hours at a time or sometimes days. The worst is the optical migraine--or whatever it is called. It is like having ripped vison and where it is ripped, the are sparks and bright lights shining thru.
Very scary.
But I am used to them now. They do seem to come and go.
I have babs, bart, Lyme, HME.
I have daily fevers that begin in the late morning and end around dinner time. That started with Babs treatment. It is primarily a babs symptom--cyclical fevers.
I am a visual artist and was an art teacher for a LONG time and the only one in ALL of my family to have 20/20 and not need glasses. So I take pride in my "artist eyes." Every time the doc sends me to the eye doc, everything is normal....And They have done LOTS of tests.
Sometimes a herx or a flare is preceeded by optical stuff for me.
Just my experience. Others here have spoken loads about eye problems, perhaps do a search? Good luck, sorry you have to wait, but the conference will educate your doc and he/she will be better equipped to help you! Sux you have to wait though, Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Trying to stop dwelling on the visual problems till I have some test results in (mri and lyme)... Otherwise I will go nuts!
On a side note the hospital's MRI was broken so they have a mobile unit untill it is fixed, and being the geek I am I couldnt help being impressed with it. The whole thinf was packed into the trailer of an 18 wheeler, complete with onboard generator, Siemens MRI, technicians room, storage/office room...... I know, who cares I thought it was neat though... I found a page with the specs.... I guess this setup sells for $750,000 used.... that means they can own it after what.... 400 people use it? lol gotta love hospital charges, luckily I have insurance now....
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by bob_ffxi: My doctor called igenex again, test results still are not in, and wont be till thursday at the soonest. My LLMD will be at a lyme conference so I wont find out till probably Tuesday..... Argh this waiting sucks!
-bob
My doc's office faxed em to me ASAP. Call your doc's office and see if they will do so, so you don't have to wait. Most LLMD's aren't like other docs and won't give you the old "I can't show you these until I can go over them with you" treatment.
Ihope they will take you out of your suspense. I hated the waiting also...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Wow those optical migraines sound pretty scary! The floaters are pretty annoying.
Other than having almost no vision in one eye right now, I have had new stuff going on in my good eye which sucks. The eye doctor can't see anything wrong but says it is dry eye... however the drops don't work.... and my main problem is monocular diplopia, the only way I can get it to go away is to adjust my eyelid to the correct positon for the two images to reconverge.... this is some weird type of astigmatism that came on during my last episode.... obviously there is something going on with the cornea, but the eye doc says it looks fine.... going to a specialist I was refered to from another lymenet memeber... I certainly hope he can help me and that this is not permanent.....
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
My sis works for siemens--I'm gonna forward this link to her just for fun.
Your eye stuff is much worse than what I have to put up with---I hope it is not permanent!
Good luck! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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I just ran across this page about migraine auras, pretty interesting. I have had migraines most of my life, the only aura I get though is an occasional metallic taste.
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