I was bit 3 times,thats all I remember, once in 1996,no symptoms.
2007; I can't remember any symptoms but Lab corp western bolt test showed band 41 IgG present, all others absent.
2010; remember having symptoms before finding my tick. 2 weeks (only) on Z-pack. Western bolt (lab corp) showed band 41 IgG present, no other bands.
I have another disease that has similar symptoms, diagnosed at John Hopkins.
Some symptoms started in 2006, brisk reflexes, palps,dizziness (slightly). Now over the years and many doctors, I think I also have Lymes Disease. I have so many symptoms on "the list".
I am in the process of finding a LLMD I want to go to. Funds are very tight right now.
Does anyone know what band 41 IgG is? Is it safe to say if I have one band present I probably do have lymes?
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
To answer your last question...no. You will find band 41 IgG frequently in people that do not have Lyme. About 40% of the population will test positive for it, because it "cross reacts" with other bacteria too, that you could have been exposed to in the past.
If your symptoms showed up before you even found the tick, that is probably either a coincidence (like something from your other disease you mentioned), or, it could be from another tick-borne infection like Bartonella.
But after a bite, Lyme supposedly will not impact you within the first 24-ish hours. But Bartonella could.
I am saying this because I had one tick bite as a child, and I had fevers of 102.5 degrees, THEN found the tick. My "LLMD" that I currently see told me that those symptoms could not have been from Lyme, because Lyme cannot cause symptoms that quickly. He said Bartonella can though. Since I started having some Bartonella symptoms after that tick bite, he thinks that is when I was infected with Bart.
There may be other "mystery germs" that ticks carry that could also cause symptoms that quickly.
The only way I would think those symptoms could have been from Lyme from the bite in 2010 is if it's possible the tick was attached for about 3 days before you found it.
I was infected with Lyme later in life (had many positive bands in testing), but my doctor doesn't think my first bite that gave me Bart was the bite that gave me Lyme.
Also, the tests like Labcorp and Quest are not very sensitive....so if you want a test that has better accuracy, go with Igenex. Or is that what you used?
If you have a lot of Lyme symptoms, maybe you do have it, and you just need a more accurate test. But know that it's unlikely that the symptoms showing up within the first day of getting bitten by a tick, are due to Lyme. Though like I said, they could be due to Bartonella or a "bartonella like organism."
Also, it would be good if you could let everyone else know what the other disease you were diagnosed with is.
Hope some of that info helps. If you get a western blot through Igenex and you show other more "lyme specific" bands like 39, 23, 83-93, 18, 34, (or 31 with a positive "band 31 confirmation test") then I would say you have evidence of Lyme in bloodwork.
Some people with Lyme don't test positive on the Western Blot even through IGenex.....so keep that in mind. That would make whether or not you have Lyme a really tough call.
LLMDs will normally diagnose based on symptoms. Having Lyme specific bands helps give more confidence in the diagnosis though....and 41 is not Lyme specific per se.
Sometimes more bands will show up after the disease is provoked with antibotics. So you may want to do 2-3 weeks of an antibiotic like Doxycycline, THEN retest through Igenex on the Western Blot.
Keep other tick borne infections like Bartonella in mind too.
I am NOT saying you don't have Lyme....just trying to give you some facts. Hope it helps. Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
" Anyone that has had dental work done in the past six months will show positive for band 41 as there are a number of dental spirochetes generally present."
In that quote, he is probably talking about IgM. IgG indicates "past infection," normally.
This is from one of the best doctors in the country. However, I think you should still retest if you suspect Lyme, after doing an antibiotic like Doxy.
I think that doctor is also going under the assumption that the patient tested with Igenex....so if you haven't, you may want to.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
Thank You for such valuable information. I was not tested under Igenex, I believe? PCP sent to Lab corp.
I have Tarlov Cyst disease. It is very rare and doctors, like Lymes, never diagnose it. There are only few neurosurgions in the US that know about symptomatic TC's. Tarlov "cysts" have nerve or neural tissue inside...They are cyst fill will CSF, from my dural tube.
The Tick in 2010, I think was in me for a few days, Doc had to cut it out. He said it had to be there for a while. He was just a PCP who was NOT Lyme friendly.
I will take your adivce and get tested by Igenex. I need to know to clear my mind.
Most of my symptoms are neurological, which can also be from the cyst, but not all of them.
Too many to list.
Thanks so much for your help.
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
You're welcome.
If the tick could have been attached for close to 3 days, it's possible the symptoms are from Lyme. It's just that it takes a couple days.
I would try to provoke the disease with a couple weeks' of antibiotics like Doxy or Amoxicillin before getting the Igenex testing done.
Best of luck to you...I hope you get some answers either way! Since this happened this year, the sooner you treat, the better, if it is Lyme or coinfections. Go with your intuition overall....because the tests aren't 100% accurate, even from good labs like Igenex.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
one more question please. I am allergic to penicillin so what would I take then? Do you know? I will go to a LLMD and hopefully he/she will know the right decision for me and test.
Do you know how much Igenex lab is, about? Sorry to keep asking too many questions.
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
posted
I have Tarlov Cyst disease. I Mainly have neurological symptoms but some are not.
TC's are very rare and not much are known about them, there symptoms vary from one person to another depending on where they are located in the dural tube/spine. They are on/near my nerve roots. They were diagnosed with an MRI Neurography. They are thru out my spine. There are two 'treatments' but there is no cure. Both treatments are debatable.
These cysts have caused my neurogenic bladder.
Some of my symptoms; Brisk reflexes, dizziness, muscle twitches, Palps, high pulse rate,tingles, some weakness at times, bowel issues, bladder issues and so the list goes on..Which ones cyst, Lymes, or what.? Who knows...Joints hurt too, thats not the cyst.
Very confusing and frustrating.
It leaves me to do all my own research.
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
posted
I have many of the same symptoms as you, monster. It is very frustrating and confusing.
Have you taken any antibiotics?
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hmmm. I think the Igenex testing you would want would be around $200. Insurance may reimburse you for some, or they may not.
Here is the Igenex phone number: 800-832-3200.
You can either try to get another doctor to order this testing for you (you need a doctor to write the order for the blood to be drawn), or you can wait to see the LLMD, and the LLMD would run it.
If you want to have another doctor do it, you would need to call Igenex and ask for a kit to be sent to you. Then you need to get the order for the blood draw from the doctor.
Ask Igenex on the phone, they will tell you what to do. You will need to get the blood sent out on Wednesday at the latest, via "2 day" air so it gets there by Friday and doesn't sit over the weekend at Igenex.
When you call IGenex, tell them you want the IgM and IgG Western Blot for Lyme. Then you can ask how much that costs.
But honestly, unless you have access to antibiotics, I don't know if I would do any of that yet. Because I think you should provoke with antibiotics before retesting. So maybe seeing the LLMD first will be your best bet. And the LLMD should have Igenex kits at his office already.
So I would wait to see the LLMD first.
Have you posted in "Seeking a Doctor" yet? If money is tight, say so there...hopefully people will recommend someone to you that is not too expensive.
Being allergic to Penicillin is not a problem. They can give you Doxycycline instead.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
I am always on some sort of antibiotic, but it is for my consent UTI's from my neurogenic bladder. I'm on Levaquin right now, 250 mg 1 x's day for 10 days. Usually doc has me on Macrobid (sp) I allergic to penicillin...
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
Wow, you gave me a lot of very good advice, much appericated. Everyone here is great!
I did post for a doc and had some good responses..
There is a neurologist,DR R, that treats lymes and a person wrote he gave her a kit to mail? Does that mean IGenex? probably?
There is also LLMD in tmy town and the next over, but both do not take insurance.
Would you think it might be safe to go to the neurologist to get the test and if it comes back positive maybe then switch to LLMD..Or should I not do that?
I thought if he was a neurologist he might be able to understand, a little, about the cysts too. I have paper work from Hopkins but some doctors here still will not acknowledge, some should go back to school and realize some medical issues change with the "times"
I have neurogenic bladder, paperwork, and I had one neuro tell me, in so many words, Its in my head. IT CAN ONLY BE CAUSED BY NERVE DAMAGE.
Opps, venting..
Joints hurting lately, Lyme's, RA, or in my head. (lol)
Wishing you better days ahead...
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
onbam
Unregistered
posted
No, but it is if you get the symptoms of Lyme after a tick bite. There's a coverup, and the tests were designed to give patients negatives.
You should check out lymecryme.com unedrourskin.com undertheeightball.com and the links in my signature.
I'm so sorry to be a bearer of bad news. Best of luck.
IP: Logged |
posted
Thanks I'll check out the links
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I believe Tarlov cysts are also in cover-up. They are rarely diagnosed.
And even rarer to operate, citing it does the patient more harm than good.
If that is truly the case---the question is why? Could it be that the cysts are full of organisms they have not been able to see under the
microscope and when they operated and possibly ruptured the sacks the infection was catastrophically spread....
I think you need to seek a LLMD to fully assess your condition and treat...Most lyme patients rarely have just Lyme and that you can believe..
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Tarlov cysts are rarely diagnosed. Most radiologist won't even mention them even when they are clearly see them on an MRI. Sadly, doctors are taught that these "cysts" are always asymptomatic, which is not true.
Tarlov "cysts" have nerves or neural tissue inside...They are cyst fill will CSF, from my dural tube. The dural tube holds the spinal cord,nerves, and csf. sort of speak.
The "pressure" in the cysts cause the nerves to be irratated or damaged over time.
Some people with TC's also have other medical problems too.
Only treatments are; operation or AFGI (aspiration fibrin glue injection) both are not cures and could cause problems.
With so many neurological problems it will be hard to tell Lyme, unfortunately.
I will try a Lyme neurologist, i like, first.
I really like this site, Glad I joined.
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Monster, I trust Hopkins as far as I can throw them.
I don't buy the diagnosis you were given and I'll leave it at that. Kind of a gut feeling based on my experience with Neurologists.
Hopkins told me I had POTS. They put me on a tilt table and my Heart Rate went up when I was in an upright position and it went down when I was supine. They were giving me IV Isuprel during the test to race my heart and to see if my BP would drop and if I would pass out, which is criteria for the POTS diagnosis. My blood pressure held just fine, I never passed out, and when my heart rate got up around 200, I screamed for them to turn off the Isuprel as it felt like I was gonna have a heart attack and I couldn't breath. So, they said it was a presumptive positive. I knew right then something else was causing this and they just wanted to be done with me.
I agree with the others that say to get Igenix testing, b/c if your positive, you get piece of mind and direction. If negative, then where do you go. You have many symptoms of Lyme. Personally I would treat them since your Hopkins diagnostic treatment isn't going to happen. Also, you should make sure this Lyme Neurologist treats a clinical presentation before you see him/her.
Just my thoughts... I've seen way too many misdiagnosis on here and off here as an RN x 17 years.
I was told I had a torurous vertebral artery in my brain pushing on my brain stem causing all of my symptoms by a Vascular Neurologist. I sat in a hospital bed for 8 days scared to death as I was told no one would even touch my case in the entire U.S. as the risk of stroke, bleeding, and death were very high. On the 8th day, the Neurologist comes into my rooms and says he's sorry, he made a mistake and although I do have this torturous artery, it is congenital and providing blood flow just fine and that something else must be causing my symptoms. I guess a Sorry is all he could give me, but I wanted to strangle him for putting the fear in me like he did for 8 days.
I'm rambling... good luck, however your proceed.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
Also, you should make sure this Lyme Neurologist treats a clinical presentation before you see him/her.
I am difinitely sure I ALSO have Tarlov cyst, I can see them myself on my MRI. Doctor do not want to believe these cysts are symptomatic but they are. I have neurogenic bladder from them.
I am not sure if lyme can cause that? Maybe?
I had too many doctors in the past try to tell me my TC's do not cause problems, until I found my neurosurgeon. He was the only one who believed my symptoms, And trys to help people get there lives back.
I joined a forum for them just like this one for Lyme. They also have a doctor list.(a very short one)
Doctor try to cover up TC's. There are hardly any doctors who treat/understand TC's. There is only one Doctor who treats Tc's at Hopkins and he just left hopkins to go into private practice.
It breaks my heart when I read here on this site and on the Tarlov site. These people lives are changed for life. Many on disability and live with pain everyday....Love one effected too...Its very sad for all!
I am sorry what happened to you..
I hope you find help in your recovery.
Thank God for these forums so we can help eachother.
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It is rare you will find a Surgeon to operate on TC's. Even if they are causing excruciating pain and debilitation.
I know they sure hate to operate on brain cysts if they don't have too. In fear of spreading the infection further....
When there is no other physical explanation for pain it should be suspect that a person can get cysts formed around organisms by the body even if those organisms cannot be seen.
The neurological signs for Lyme are already there.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
I am so new at this and what to learn and know what is wrong with me.
Can Lyme cause neurogenic bladder? I was told it is caused by the cyst. The cyst is on my S3 nerve root. Causing bladder, bowels , and female Problems.
Posts: 15 | From new jersey | Registered: Jul 2010
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Lyme can invade the nerve cells that can cause any neuro disorder. Sent you a PM. My sis has been to the best spine surgeon in the state for relief and he would not touch her..I have no doubts they can be caused by organisms or they would have no problem giving patients relief for these.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic