posted
I finally got the blood report back from IgenX and it was negative for Lyme so I guess all my symptoms are from something else, but what?
I went to the neuro and had a MRI which was OK but did show sinusitis. He also did an adreanal gland function test which was also OK. He also feels it isn't MS, but could be what he called essential tremors.
I did go back to my PCP and he started treating me for an ear/sinus infection. The worst symptom was the dizziness (I could hardly walk)and I still had the weakness and tremors. I was treated for the next 2 weeks with zithromax (didn't do much for the dizziness so was given sudafed & rhinocort nasal spray) and the amazing thing was the weakness and tremors went away.
It has now been over a week since finishing the abx and yesterday the weakness & tremors were back (not as bad as before) and it always feels like something in my head is moving.
I now have to go to the ENT today as I still have alot of head congestion and plugged/ringing ears, and lightheadedness (at least not real dizzy) and it feels like a stiff/achy neck. I guess I must still have some kind of infection going on that the abx didn't quite get rid of. Has anybody ever heard of an ear/sinus type infection also causing the weakness/tremor type symptoms?
I can understand the ear/sinus thing causing some of my symptoms but not all, and I find it very interesting that the while on the abx alot of my strange symptoms, but not all, went away. Anybody have any thoughts?
Posts: 17 | From NY | Registered: Nov 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Dava,
I'm a big believer that many of us are suffering from much more than just lyme. My doctor and I have been working on other issues he found in me since April and just yesterday my most current bloodtest results show all my vitals to be dead center of normal. This is much improvement from the terrible state they were in last April.
We have identified food allergies which apparently have been the main cause of symptoms. Also, we identified a serious level of lead and elevated mercury which he has been slowly (because too much too fast puts me in bed) detoxifying.
Yesterday, he declared me a success story. We are now on maintenance level. Some things, like avoiding my food triggers, will be for life. Other things like the glut IVs and the BioPuncture shots (great stuff!!!) will continue for a time although we are cutting back by half to see how I do.
My life is back to normal after being completely housebound and disfunctional.
If Igenex found nothing, don't assume no lyme as we all know how poor the testing is. But do pursue and either rule out or treat all the other possibilities. Then see where you stand with your symptoms. If your doctor is not up on that, find one who is.
You are in N.Y. and I am in VA. Still, I will be happy to share my doctor's name if you are interested. He might at least consult with your doctor if your doctor is willing. Just PM me.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
When you say the IGeneX was negative do you mean that you didn't have ANY indeterminate bands or that you weren't "positive by IGeneX standards"?
I'm negative by both IGeneX and CDC standards, but had Bb-specific bands come up IND. After 4 months of abx I'm much improved, though still have a ways to go.
Even IND bands can indicate Lyme infection, so if you could clarify this, it would help us to help you.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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posted
Penn92: I was negative for B burgdorferi and the only band that was IND was 31, and the IgenX IGG result was negative. I'm still not totally convinced that some sort of tick borne illness isn't involved. I have to many other symptoms (like Low Magnesium/Mitral Valve Prolapse/Rashes/Fatigue to name a few)beside the weakness & tremors that have developed with no apparent cause. I will have to see what the ENT has to say today. Thanks, Dava
Posts: 17 | From NY | Registered: Nov 2006
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posted
Penn92: I was negative for B burgdorferi and the only band that was IND was 31, and the IgenX IGG result was negative. I'm still not totally convinced that some sort of tick borne illness isn't involved. I have to many other symptoms (like Low Magnesium/Mitral Valve Prolapse/Rashes/Fatigue to name a few)beside the weakness & tremors that have developed with no apparent cause. I will have to see what the ENT has to say today. Thanks, Dava
Posts: 17 | From NY | Registered: Nov 2006
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posted
There is an inner ear type of infection (not just an ear infection) that is treated the same as lyme. It causes the balance problems and other similar lyme symptoms. I can't remember what it is called but that's what they put onmy mom's insurance when they treated her for Lyme. (The ID doc didn't want to report it as Lyme so he fudged it. At least she was treated.)
Hopefully someone else will know what type of infection I'm referring to. I'm sure the ENT will know - that's probably your best bet right now. Good luck to you...and don't give up! If the next doc doesn't find a diagnosis and treatment, move on to the next one!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My advice is to find a LLMD. Band 31 is Lyme specific and with an indeterminate a LLMD might diagnose you if you also have a history and symptoms that support Lyme as a dx.
Just my opinion, based on what I've learned here and other places.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Lymednva is right.
You mean on both IgM AND IgG only ONE band showed up with anything?
That could mean you are just not producing antibodies. The 31 band is VERY specific. How do your doctors propose you got an indeterminate on that band if not from b. burgdorferi exposure?
Do you have a copy of your test results?
You REALLY need to see an LLMD. Based on not only your symptoms but your response to antibiotics, you're extremely suspicious for lyme, in my opinion.
Lyme has definitely not been "ruled out." Sinusitis is common in lyme, though I don't know why. You need to be on antibiotics. Find an LLMD! You probably know more about lyme yourself than the doctors who are supposedly "ruling it out."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
An IND on 31 is notable. You may still have Lyme and just not be producing antibodies. I would do the CD57 test next and coinfection testing also.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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please EDIT MY PROFILE to allow personal messages, pm, and also while there to edit search date to ANY DATE, click edit send when done!
i believe it was your 2nd post above that is one solid block of text. please break this up for readability.
click the pencil icon to open it up and make paragraphs out of it. hit the enter button twice between each paragraph like i've done above.
when done doing this, click the edit send button.
send me a PM, 2 people standing together, and i'll send you my 21 pages newbie links/advise; you'll see the long symptom lyme list too!
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
My approach is: rule out everything. If nothing is found what you have is Lyme in spite of negative Igenex tests.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Lyme isn't ruled out. Band 31 is significant. Ask your doctor for a HNK1 (CD57) and an ASO Titer.
if you have a high strep titer, you will not test + for lyme. I have 4 children with high ASO titers. They have taken abx for a year. The youngest finally got a drop in his ASO and he tested CDC + for LD through Labcorp. He was originally tested through Igenex with all neg bands. He had a known bite and a rash so we knew he had LD. Thankfully I had picture of his rash and a doc that was willing to stick with with us.
elle
"Dr. Mattman stated that if streptococcus is present, it must be treated first before the Lyme is treated because Borrelia feeds on strep. In other words, the strep stimulates the growth of Borrelia. Furthermore, it is impossible to culture Borrelia whenever strep is present because strep is a faster growing bacterium and it will overgrow the culture medium as a 'contaminate', obscuring the presence of Borrelia." http://www.rheumatic.org/faq.htm
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
that is interesting elle,
I too have high strep titre, actually went up on amoxy........my body can not handle the abx.
Dava, i would suggest a Cd57........I was also thinking you might have some yeast involvement, how is your diet?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I am not an expert and not been on here lot but from everything I have read and am learning I would not rule it out. My tests (elisa & WB both have come back negative) but so have my tests for everything else. GP and Infectious disease doc both said the place on my leg was bruise (for 8 months) and all my other symptoms were individual (I have arthritis, strep causing me to feel run down, fever, no explanation for a lot of things - I know stabbing pains so bad they wake me up are not arthritis). Sent me to podiatrist because the pain in my feet was so bad I couldn't stand to walk - he said it was from calluses. The podiatrist laughed...then I showed him leg ....he was the answer to my prayers though and I almost didn't go to the appt because I knew it actually had nothing to do with my feet. He was from Mi and his partner from WI. They knew so much more than the other docs put together. They both had previously worked with individuals with lyme and knew all about it. Said they were absolutely sure I had lyme because of bullseye bruise on my leg. He said that due to the enormous amount of types of bacteria and the fact that they hide we may never get a positive result. But, if the doxy I am on now does not clear it up they are going to help me get the help I need.
Posts: 32 | From INDIANA | Registered: Sep 2006
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