posted
Well, it has been a long time since I have been on this website. Some of the long time posters will probably remember me.
I will make a long story short. Mis dx'd for years..since 1996. Started treatment several years ago...did every abx under the sun. Treated by 2 different LLMD's..both high recommended. My last treatments were over a year ago with Bicillan injections weekly. I did those injections for several months. Sadly, I ran out of money and could not afford seeing my LLMD anymore. I was symptom free for about 2 months when I had to stop seeing doctor.
I did wonderful for a whole year. Not one problem. Life was grand. I was so well that I have excelled in nursing school. I graduate as an LPN in 3 weeks..top of my class.
Well, things are going downhill fast. About 8 weeks ago started to having numbness in face..unilateral, trouble swallowing, no gag reflex. Pain in right knee, hurts to walk and unable to extend it. No swelling though. Terrible shoulder and neck pain. Most of my symptoms are right sided. Terrible weakness, anxiety. Now the burning is coming back in my extremeties, dizziness, palpitations that are pretty bad.
My neuro did an EMG, MRI, evoked potentials. EMG showed some pinched nerves, MRI showed one spot on brain but was not indicative of anything, evoked potentials was normal.
My blood work showed Low Vit. D and I am anemic. Started vitamin D and iron.
Neuro wants to do another lumbar puncture just to ensure that this is not MS. He says we can't blame everything on Lyme and we need to be sure.
I agree with this in one way because Lyme sx's are so close to everything. The thing is though I know he won't treat me for Lyme.
Do you think I should just have the LP done to make sure it is not anything else before I go back to LLMD. I was considering having a local PCP of mine write a script to have more Igenex labs drawn. I was not Igenex positive before..just IND but with some highly specific bands. I was positive for Bartonella.
I have to say though the the mental sx's are getting to me the worst. I feel so defeated, scared, anxious, depressed..you name it, I feel it. I do take meds for that. Recently switched to Cymbalta and Xanax PRN.
I guess I just needed to vent and hope for some opinions. I feel so lost right now.
My neuro wants to wait until after my graduation before doing the LP...I graduate on Dec. 4 but I am really struggling.
Any thoughts, advice or hope to offer would be so appreciated.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Kit, so sorry to hear, but it sounds like a classic relapse of lyme. All of your symptoms sound like the lyme symptoms that I had that went away with antibiotic treatment.
Personally, I would see the llmd before getting the LP. MS is just a description of symptoms that can also be caused by lyme. If you do a search here under MS, you can read much about it.
But this is your decision. Hope you can see the llmd soon.
Posts: 2557 | From home | Registered: Aug 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Kitkat...
i remember you. Glad to hear you were able to get your LPN and at the top of the class. Wow.
Sorry, to hear you are relapsing or going through what could be lyme symptoms again.
Ouch.
Looking forward to hearing how your visit goes with a LLMD.
Hoping that will give you hope again and a course of recovery.
In the meantime, good to hear you are ruling out out the zebra's.
(Watch the video on coverage in Canada about lyme disease)
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I think I might ask my PCP on Tuesday to sign the paperwork for Igenex lab. It is like pulling teeth though because he doesn't believe but it's worth a shot. I put up a good fight to him so maybe he will give in.
I just feel so terrible and discouraged. Don't know how I am going to make it through these last 3 weeks of school. It's hard to take care of people at the hospital when I feel like such death.
My head is spinning with the what if's again.
My previous LLMD was Dr. H in Hyde Park. Haven't spoken to them in over a year. I wonder if they will pick my treatment back up.
Still don't know if I should have the LP too just in case it is something else going on. I feel like my head is just bobbing above the water. Do you know what I mean? I just don't know what to think anymore.
That is my LLMD too and I am pretty sure they are accepting new pts. at this time again. I would call the office and see if then can at least get you in a.s.a.p. Then you can have all the tests run again if you want. I would bet that the re-testing is not really necessary as he does treat based on symptoms too. I am sure it is so discouraging but at least you know you can get to the point of having a year symptom free off abx. You will get there again. IMO I would not want to wait as it can take longer to get back to where you were if you let the bugs get the upper hand.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
Is it babesia that can cause redblood cell and iron problems?
or is that bartonella?
Posts: 458 | From Miss | Registered: Mar 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Kit, hang in there.
For many of us, in my experience and that of others (see Pam Weintraub's book on this point), it is quicker to get better from a relapse than initial treatment.
So, you know that you can get better from treatment and will again if necessary, probably much easier than the first time.
Congratulations on your accomplishments; get as much rest as you can during the next couple of weeks!
Posts: 2557 | From home | Registered: Aug 2006
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
KitKat-
So sorry you are suffering again. Please note that low vitamin D levels and low iron levels can make you feel HORRIBLE as well....you might want to check out all of the discussion about this at www.fightingfatigue.org
Also, have you started any news meds, statins for ex., that could be causing the neuropathy?
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Thanks for your replies. Believe it or not I am feeling emotionally uplifted already. Just feels good to share with others that understand.
I haven't started anything new besides the iron a month ago and just recently 50,000units of Vit. D twice a week plus calcium. Everything started before those were taken though.
I will check out that website site Bugg. Thanks for sharing.
posted
I would call the LLMD. I don't think they consider relapsed patients to be new patients, so they should see you, I think. They told me all I had to do was call if I needed to be seen again.
I'm sorry you're feeling bad again. It's what we all fear.
I don't believe it's all Lyme, but I also think something causes MS, and sometimes it's Lyme. I personally wouldn't be looking for a name for my symptoms, I'd want to find the cause of them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
So sorry to hear about your relaps. The first time when i contracted lyme i would take meds for about 8 months and stop i would go a year with out them and then go down hill.
If it was me i would go to your lyme doc first let him run these other tests to rule them out. If its lyme you will have to go to him anyway. Why pay two docs. Also your reg doc if not lyme literate wont give lyme its due.
I know i was better after 8years of being sick i was well for 6 and this last year started with the same ole symptoms i tried to ignore it until i couldnt get out of bed. Now im in bed. My lyme test was only 1 marker. I went back to my lyme doc. I also have low vit. D. I have been taking it every day since.
Hope you feel better sooner than later. Congrates on your accomplishments. Not an easy task with lyme.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
Hey..I see some familiar faces...Carol,sixgoofy kids,Vermont!!! It's been a long time. Hope your all feeling well.
The only reason I was going to continue with my neuro is to be checked for all the other things it could be. Has anybody read any recent studies on spinal fluid and lyme? Is it still not considered a good test?
On a positive note I feel like I have educated many in the medical community on Lyme since starting school. I speak to anyone who will listen.
I will call the LLMD tomorrow and see what they have to say. I used to do phone consults but I am sure they are going to want me to come in the first time. Maybe he will order some labs and tell me to come when they are back. I can't miss school during the next few weeks since we are reviewing for state boards and being absent is really frowned upon.
I truly do not know how I have made it through these past 8 weeks or so. I thought it was awful all those years I struggled at home. Now when I actually have to leave the house it is much worse and my anxiety is through the roof.
Hubby is on board about going back to LLMD. It is such a financial strain. We still aren't caught up on our credit card from my previous appts.
It was heaven for the last year though. Every few days I would reflect back on how life was. I hope to achieve that again.
I would definitely call the LLMD as soon as possible. Since you are an old patient, perhaps he can even prescribe something to get you started on that will help you get through the next 3 weeks before graduation--not sure if they do that or not, but since you are a former patient, I don't see why not.
Good luck and please keep us posted on your progress.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
Definitely get in with the LLMD as soon as possible. They can start you on some antibiotics and if you start to see some relief in your symptoms then you will know that this is definitely the lyme flaring up and not have to wonder anymore.
It sounds like it probably is the lyme though. Sorry that you are feeling so ill. I am sure that is so hard after the great year you have had.
Congrats on all your accomplishments.
Hang in there!
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
Thank you so much everyone for your encouraging words and suggestions. Sorry it took me all day to respond. I had clinical at the hospital all day. I don't even know how I made it through the day.
Just a quick update. Called Igenex and spoke to receptionist about my prior tests in 2005 and 2008.
She put me through to Dr. Harris's voicemail. I have spoken to him before and he is always so helpful. I would like to ask him what would be the best tests to get at this point. I know that since I already have tests with IND for Lyme and positive for Bartonella that new tests are probably not neccassery but I will be better armed for my PCP if the show positive.
I want it drawn before I start to take any antibiotics too. My hubby is going to goto our PCP and fight with him until he signs the papers for the labs.
So that is my game plan at this point. Hopefully I will hear from Dr. Harris soon. Can you believe I can't find my results from 2008? I usually guard them like they are a million dollars!
Again thank you too all the new faces I have meant and to my old friends.
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