Hi there. My doc just suggested a spinal tap........to diagnos lyme....is this necessary?
Also what is the connection between chronic epstien barr virus and lyme? I have beent trying to determine what is going on, and the only thing that comes back every time is positive for an active mono infection.
I had a tick bite in '06 or o'07 that was treated, then I had a surgery which triggered "something" in '08. Lyme was tested negative at that time, but later positive for a "new infection" (in the middle of the winter???) of '09. Another 2 weeks of doxy....but nobody ever tested to make sure that took care of it.
I have CFS symptoms and massive debilitating brain fog. Sometimes positive ANA and always low positive Rheumatoid factor. I also have antiphospholipid syndrome (clotting issue) so they thought lupus for a long while.......
Any info would be great. How does the spinal tap help with the diagnosis? Is it necessary? What is the connection between mono and lyme?
Thanks
Posted by bcb1200 (Member # 25745) on :
pme....To quote Dr. B (famous lyme doctor) "Spinal taps are to look for OTHER things..NOT LYME."
Do not do this. It is not a good lyme diagnostic tool and could be used against you by insurance companies.
I sugguest you RUN from this doctor and find an LLMD (lyme literate MD) who will give you an IGENEX test which is a better way to help test for lyme disease (although still not perfect.)
Regarding your other question...lyme attacks the immune system so often many people have chronic viral and other infections in addition to lyme.
Watch the 2009 documentary film "Under our Skin" (www.underourskin.) It highlights the lyme disease controversy in the USA. Available on demand now and likely from your local library.
Good luck!
Posted by erikjh1972 (Member # 20964) on :
how long have you had these issues???? sounds to me like its been lyme all along. spinals are almost useless in diagnosing lyme, unless your ruling out things----dont even bother.
Posted by erikjh1972 (Member # 20964) on :
i just read your sig., 2 weeks and 2 weeks??? i of course am not a Dr. but that description is lyme, sorry. you need to talk to a LLMD as soon as possible.
Posted by Abxnomore (Member # 18936) on :
I would never do a spinal tap. If you have a good LLMD, I doubt he would suggest you get one. Spinal taps rarely provide much information and it's invasive and often leaves you with a horrendous headache for days.
If you don't have a good LLMD, get one first before agreeing to such an invasive procedure.
Posted by pme (Member # 31621) on :
I have had these issues for 3 years.....triggered by a sinus surgery. I had the sinus surgery about 2.5 years after my youngest was born. She did not sleep until she turned 4 (at all!!!) so I was completely sick (polyps) and sleep deprived going into the surgery. I have not been the same since, I took 6 months off and then gave up gluten. Seemed to help a bit and I was able to go back to work.
Now the brain stuff is really bad. I have a private practice so if I have to I can take time, but then I leave my clients in the lurch. I also have pain in my glands and ears, headaches, post exercise issues, alcohol intolerance.
I had anemia so I had a hysterectomy in September thinking that would be the answer to the debilitating fatigue. Hematocrit is up but CFS is still here.
It was my rheumatologist who said spinal tap...but he just said he would refer me to an ID guy I saw before..."maybe" to do a spinal tap. I figured forewarned if forearmed.
I can get into this guy quick, maybe he can just run the tests. I don't think he is a LLMD (how do you even know?).
I have put a few calls in to LLMDs based on recc's from here. Why did none of my doctors pursue this? I think it is because my bloodtests are weird but I look healthy (to them). To me I look like death warmed over....can't lose weight, skin issues, my eyes are just sinking into my head. I need an answer so I can make some decisions about my future (should I stop working for a while? If so how long? I need to prioritize and my kids and hubby are top priorities. Feel like I need to make a choice between having energy to work (barely) and to be a good mom.
Forget about a rewarding social life or exercise program at this point.
Thanks for your input!
Posted by timaca (Member # 6911) on :
pme~ It is possible to have both chronic bacterial pathogens (eg lyme) and chronic viral pathogens (eg EBV, HHV-6 enteroviruses, etc) causing your problems.
Spinal taps are useful for ruling out some medical conditions. They may or may not pick up viral or bacterial infections. If you are going to have one done, you may want to get tested for some of the pathogens mentioned on the above website.
I did have a spinal tap done...I was tested for Lyme. It was negative. And normal in all respects. But I do have significant neurological problems which we now know are due to various infectious pathogens.
Best, Timaca
Posted by Abxnomore (Member # 18936) on :
Of course, "It is possible to have both chronic bacterial pathogens (eg lyme) and chronic viral pathogens (eg EBV, HHV-6 enteroviruses, etc)".
I would dare say there are very few of us who have lyme who don't have these other bacterial and viral pathogens and more.
If any one is seeing an LLMD who is not checking for what you mentioned above, then they are not seeing a good LLMD.
To me it goes without saying that the above pathogens are all part of the Lyme disease complex and need the same attention as borrelia.
Posted by pme (Member # 31621) on :
Thanks so much So....is there a connection between them or is it just pure lucky coincidence:)
Still waiting to hear back from LLMD
None of the Drs. have a "record" of my positive lyme test from'09. As part of the brain fog phenomenon I can't recall which doctor actually did the test, but neither of the possibilities can find the test in their records. I will have them look again...neither are very organized.
Anything that can be done about the viral infections? Need that checked out further.
Thanks for the info
Posted by Abxnomore (Member # 18936) on :
Lyme is a clinical diagnoses. A good LLMD doesn't need a positive test and will know what to do about the viruses. But mostly those who do integrative medicine will.
The LLMDS that only dispense antibiotics probably won't. There are many supplements that help with the viruses and even anti viral medications.
Posted by pme (Member # 31621) on :
bcb1200...I printed out and am digesting Dr. B's information. I took the symptom quiz. I have some moderate to severe amount of probaly 70% of the items. I just got home from a meeting and am looking forward to reading more about this perspective.
Just someone please tell me that there is hope for recovery of near to normal functioning. For 3 years before this onslaught and now 3 years after I have not been myself. Being completely sleep deprived for 3 years and experiencing all these symptoms for another three has left me with really no hope at all. Until the powers that be can put a finger on this...I am trapped and labelled as a hypocondriac, problem patient, attention seeker. It almost gets to the poing where you start to believe it yourself.
The thing about the symptoms though is that they can be symptoms of a lot of other things too. That is frustrating for me and I am sure for most doctors. I pray that the right one will come my way soon. I need some hope.
Posted by Elaine G (Member # 20735) on :
pme, I am happy to see that you took the plunge and came on Lymenet to persue this further.
I hope you let me know how you make out with your LLMD and testing.
Wishing you the best,
Best, Elaine
Posted by Lymetoo (Member # 743) on :
Read the following links and THEN decide if you really want to do it.
You have about a 20% chance of finding Lyme in a spinal tap and then when it comes back negative they will use that against you to deny treatment.
I would not do one unless my life was in immediate danger.
I was ill for 42 yrs before being treated. I am now well. You can get well too.
Posted by pme (Member # 31621) on :
I already know I will not do the spinal tap at this point. I agree and was shocked at the implication. Exactly why I asked about it. Thanks!
Posted by t9im (Member # 25489) on :
Hi pme:
On some of your points. The spinal tap is useless, maybe 3% of the time it will come up positive.
The controversy in diagnosing and treating the disease, see links below to view.
I have found with many LLMD's their staff is over worked and you need to keep calling verus expecting a call back.
Your main stream MD's will use the elisa screening test (over 35% false negative) and if your lucky a Western Blot from a main stream lab (which excludes lyme specific markers). You will need IgeneX for all the markers.
To me it sounds like you were never treated long enough initially. Were you treated with only two weeks of Doxy originally (you said your second treatment was only two weeks)? Two weeks of treatment is not long enough.
Sometimes when the immune system is suppressed symptoms can come out. Your surgery may have triggered symptoms.
Posted by pme (Member # 31621) on :
Wow! I really need to get somebody to see me. I can't believe the number of responses I have gotten on this site. Thank you for the help.
I guess I wasn't treated long enough either time. Yes 2 weeks each time. Second time I have to admit I didn't buy into it because of the timing of the testing. I am not sure I even finished the abx because I had tested negative when I was sure I should have tested positive, then the opposite happened. This is all so damn confusing. This has been a long 3 years.
Posted by pme (Member # 31621) on :
Any suggestions about work? I can take off if I need. I won't get paid. I feel like I need to but don't want to take too much time and am not sure how much I wi ll need on the other side of this (once and if this gets figured out). My brain is messing up all the time and I am having a hard time hiding it any more. What did you do? I have no more confidence in myself at work.
Posted by apljack (Member # 14233) on :
If you can go part time, maybe that is the solution.
I would suggest you get your child tested too. It's quite possible that she has lyme too. The sinus issues that you spoke of could be lyme too. I was very close to sinus surgery and had a hidden sinus infection that was remedied with lyme/babs treatment. Also, it is very common for lyme to be triggered by surgery.
My 8 yr old is presenting with problems all over the board. She has tested positive for strep titers (PANDAs) and mycoplasma pneumonia. 3 IGG bands for lyme. Never seen a bite. Our first year with her was the most difficult year of my life. She had major sleep problems and they are coming back.
This is the site to be on. Try to stick to Dr. B's guidelines. If you want to do herbal remedies, you can get that help here too.
Good luck.
Posted by pme (Member # 31621) on :
I can't even function right now. Funny part is I went to my ENT 6 weeks ago. She put me on prednisone to clear my sinuses for an MRI (which never happened until this past friday so it was needless to be on them). I think they triggered a major flare.
I can go part time but I am a speech path in private practice. I work one on one with kids with multiple special needs and their parents. I am under the microscope constantly and internally I feel like I am no way near the place I need to be to help these kids. Forget about paper work. Can't even function to do it at all.
Thanks again
Posted by apljack (Member # 14233) on :
Leave of absence. Start with 3 months.
DO NOT TAKE Prednisone if you think you could have lyme. There is more on these boards about steroids. There are some major repurcussions wtih steroids. While I haven't personally taken any, others have and they report back with terrible implications.
Get your butt to an LLMD, even if it's a long drive.
I'm not a doctor, just another sufferer, well on my way to recovery!
Posted by apljack (Member # 14233) on :
Also get tested for Ehrlichia. That could be your major problem. Doxy, doxy, doxy. Need to be on it a minimum of 45 days at a killing dose, not a "maintenance" dose. Some chronic ehrlichia is resistant to doxy and you'll need two abx.
PM me if you want dose info.
Posted by pme (Member # 31621) on :
A neighbor was tested for Ehrlichia about 3 years ago. Would the typical lyme tests come back negative if it was Ehrlichia.
Have called every doc on this list. Cannot get one to call back. Called a couple again today plus some others. I keep getting machines.
Posted by apljack (Member # 14233) on :
Keep at it. I know the nurse/receptionist at my LLMD lets her calls go to the machine. They are very busy as there are not enough doctors willing to treat.
No, you must test for Ehrlichia. Lyme could be negative and you might have a positive for Ehrlichia. Then, you know you had been biten and as much, must treat for co-infections if you have symptoms and/or doxy doesn't make you better.
Have you seen a rheumotologist? Mine started me on plaquenil and that helped. It's a slow and gradual process but nonetheless, symptoms do start to disappear.
You would think the ID doctors in Connecticut would treat lyme. But, I just don't know. Maybe you can convince your primary to get the Igenex testing done on your credit card. That way, when you do get into the LLMD, you've already got the blood results. Igenex website has all the info for testing. Must overnite. Also, do blood on Mon, Tues or Wed, so it doesn't sit around over the weekend.
One more note: always get copies of your labs. You might want to start this collection process if you haven't already. LLMD needs to see everything.
Posted by apljack (Member # 14233) on :
Sorry, reread your posts and see it was the rheumy that wanted the spinal tap. Yeah, I would avoid that.
Never heard of steroids for sinuses, but I always had infections. I don't anymore, not with the lyme/babs treatment. Used to have one every few months or so it seemed. Haven't had on in a looong time.
Posted by pme (Member # 31621) on :
Have been seeing a rheumy (2 actually) for 3 years (really...they look for lupus all the time). He is good and ordered a lot of blood tests...nobody ever questioned the consistently positive monospot (except me) I got a variety of answers but....
Still being a PITA to the docs....still no return calls. You are right! They all let calls roll over into a machine. Never have I ever had that happen but apparently all the LLMDs are busy here in Lyme country USA.
You are right about copies of the labs....have some. I probably have had them all but can't find them (again..blame it on the brain fog)
Posted by pme (Member # 31621) on :
Finally go through to the doc that my neighbor recc'd who really has done a great job. May be able to get in in 10 days. The office assistant was very very nice. Fingers crossed.
Posted by Elaine G (Member # 20735) on :
Hope you get an appointment soon.
Good luck !!
Posted by sickntired19 (Member # 21949) on :
I am sending you a PM!!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pme: A neighbor was tested for Ehrlichia about 3 years ago. Would the typical lyme tests come back negative if it was Ehrlichia.
- Yes.
Posted by pme (Member # 31621) on :
Starting to feel panicky. Doc was supposed to call back this am, tried to call but they are out until 1:30 which is of course when I will be in with a client. Faxed my stuff to them this morning. Also heard from another doc saying that they don't take insurance and that it would be 1000. for first visit. I almost don't care if I can just get somebody to schedule me a stinkin' appointment. I am losing it!