posted
I am at the end of my sanity now. I realize everyone has remained patient with my questioning this lyme diagnosis, but even the LLMD office is questioning it now. Negative western blot (except band 41..which they said was common for everyone with and without lyme) and now cd57 is 176..in normal range. They said that someone who has lyme normally has a very low range. The only thing that says maybe lyme is the MRI..but it also says maybe MS or vasculitis...I cannot just stay on omnicef for another month while I await my second appt. It is doing damage to me physically (not hexing..just my regular abx issues). I ordered five lyme books..read them all and even bought the underourskin video..but in every case each person had at least one test that gave them and idea of lyme. THe girls in the LLMD office dont know what else to suggest for me, except to wait and see Dr R again in feb? I feel as though I am wasted so much time on my health issues by just taking this abx..it will be over 2 months with no affects at all. Sorry but I had to vent to someone. I am confused and going through other very stressful family issues since jan 1...so this is making me nuts already. Appreciate your all listening and help through this whole thing..if nothing else I got a great new diet plan...I dont have the inflammed joints that you guys have..just arthritis for the past year. My issues have all been vertigo and neuro problems..I will wait to speak to the doctor once again...but wow over two months of "we dont know" is getting to me already...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
First of all Lyme Disease is a "clinical diagnosis"! The test can be used to back up that diagnosis, but not used soley to diagnose.
Here is my story.......I started treatment with just band IGM 41. I had a "clinical diagnosis". Almost a year later I got an IGM CDC positive test.
Also I did not feel any better until after a year and a half into treatment. The last year I have had gradual improvement. I have treated a little over 2 and 1/2 years so far. And this is a very very common story with many lyme patients. A few months of treatment is nothing where LD is concerned. You will have to be way more patient!
Your doctor does not sound very lyme literate to me. I would think about finding a new doctor. One that realizes that LD is a clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Camp Other
Unregistered
posted
If you have proof of neuroborreliosis then it needs treatment. If your LLMD has doubts, then if I were in your shoes, I'd take your MRI scans to the best neurologist in town, tell them your symptoms, and get their opinion just to cover that base - especially if you have insurance and it covers it. Ask them what could cause vasculitis and if that's what you have.
If nothing turns up and you want to continue to pursue the possibility of Lyme and other tickborne infections, then maybe seeing a different LLMD for their opinion is in order.
Two months of antibiotics, btw, is nothing for most people treating this condition. And people with neuroborreliosis usually do get IV treatment because it is better treatment. But if you have oral antibiotics that pass the blood-brain barrier, those should work. Most people I know are on combined treatment for that, though, and not just taking one antibiotic like Omnicef.
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
annier,
Sorry you are feeling this way.
I wanted to say that it took me many months to have some improvement that was due to antibiotics.
I had some improvement around 3-4 months into Rx due only to bioidentical hormones, but even small improvement from antibiotics took 9 months for me...and I was on combos, not just a single abx.
Doxy has worked the best for me.
You are VERY early in lyme treatment and I am not surprised that you have not improved yet...and you are on only one abx.
You said that only thing that says lyme is the MRI.
How about your history of degenerative dizziness for 2 yrs after untreated tick bites, your present symptoms (vertigo and neuro problems) and the exam findings of your LLMD?
Did you have any worsening of any symptoms with abx?
It takes many, many months (years, even) to recover.
It will take different combos of long term abx.
What about coinfections tests? Did anything show up to point to bart, babs, ehrlichia, etc?
Trust your LLMD's judgement. Ask him if you can try a combo like doxy, zithromax and plaquenil.
I know it is normal for everyone to want that one lab tests that says, yes you have lyme...but you have lots of signs.
It is better to tell yourself that you hope to be vastly improved in about 3 years. That is more realistic.
Then slow and steady wins the race.
Try not to expect so much so soon.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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quote:Originally posted by annier1071: I dont have the inflammed joints that you guys have..just arthritis for the past year. My issues have all been vertigo and neuro problems
Not everyone, probably not even most, have inflamed joints. I didn't have inflammed joints. I did have the arthritis, vertigo and neuro problems though.
What are your usual abx reactions?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Camp Other
Unregistered
posted
Dekrator48, do you think annier should continue to see the current LLMD or a new one? It sounds like the current one isn't treating her with combinations already and is doubting the diagnosis. If it's not Lyme and coinfections, what is it? How much experience does the current LLMD have? I'd be asking a lot of questions.
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I had a very high CD-57. I have no inflammed joints. Mine is mostly neuro.
However... I had white "spots" on my MRI and I did have bands 31, 34, 41 and 58 on my test and that's what convinced me. So don't go by the CD-57.
I saw last night on Dr. C's Facebook page that he thinks Lyme testing through a company called Spirostat is more reliable than Igenex. I know nothing about this place...just sharing what he wrote.
And, I also heard that a bad candida infection can give the same symptoms as Lyme. So investigate that if you haven't.
Have you tried the antibiotic challenge, where you take them for a period of time and stop taking them for 2 weeks an retest again? Sometimes this can provoke a positive test.
** edited to removed doctor's name **
[ 01-03-2011, 07:47 PM: Message edited by: sixgoofykids ]
Posts: 1142 | From South | Registered: Dec 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Camp Other,
I think annier will have to decide if her LLMD is really a good lyme literate Dr.
I wouldn't want to say too much since I don't know much about him.
Perhaps he wanted to see how she would react to just one abx since she was just starting Rx???
If it were me, I would see him at my next appt and ask alot of questions about what to do next and what combo I could take.
I'm not sure if the LLMD is really questioning her diagnosis or if it is annier and the girls in the office that are questioning it.
annier,
What regular abx issues are you having?
What probiotics are you taking and how much?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read your post (and many others here cannot read solid blocks of text and run-on sentences with no white space -- so that can diminish the replies) . . . but I was able to see something about your CD57 being normal.
A CD57 is not definitive for lyme. It can be normal in a person with severe lyme.
From a previous post of yours: IGG 41+ 58+ and IGM 41++
��But from WHAT LAB?
� Were you tested for other tick-borne and other chronic stealth infections?
� Is your doctor an ILADS-educated, ILADS-member LLMD or at least one who attends regular conferences, etc.?
� . . . Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation. . . .
. . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . .
================================
Dr C�s Western Blot explanation is discussed here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
==============================
If it may not be lyme but has some of the same perplexing symptoms . . .
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
wow, mine was 79!!!! and i had six numbers with double stars...
so mine was pretty obvious.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- My CD57 was normal, too, and I was told by one LLMD that he had "only seen one other patient more severely affected by lyme."
My Western Blots were not CDC positive but did have very clear bands for lyme.
So, a CD57 is not a good test for lyme. Not at all. It may help in some cases but it is not a lyme test. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmmm, but if mine was so low, then that's important tho huh?
i was doubled starred for 18, 23-25, 31, 39, 41 and 93...
hit the lottery big time...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I took antibiotics for 3 mths prior and I was still DNA neg. but I had 2 bands to say very positive...
If you are real sick it may take a while to produce enough to see..
With your symptoms that mirror mine---
severe neuro/but no arthritis--or I was so numb I did not realize how bad it was/but I did have major bone pain--
I would treat, and know you will probably get worse on the meds.
-------------------- 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
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Reading through that list will give you more understanding about your test results.
The originator of the CD57 test for Lyme patients told me himself that people can have a high CD57 count and still be sick, just as people with AIDS can have a high CD4 count and still be ill.
It is not a definitive test, just that those who are ill may show a low CD57 count that rises with treatment.
Your symptoms sound like Lyme. The staff in the office should not be diagnosing you.
It sounds like you are seeing a knowledgeable Lyme doctor. I suggest waiting for him and bringing him your questions. The trick will be to see what you can treat with.
Hang in there - it takes patience to work through this.
Posts: 13116 | From San Francisco | Registered: May 2006
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
My symptoms were all neurological from the get go. I never had any joint pain or arthritis during the 14 years that I went undiagnosed and even during the years of treatment.
You were clinically diagnosed with lyme and co-infections when you saw the doctor. We all want confirmation of a positive test. Hopefully in time you will get one. Eventually, most of us do but some of us never do.
Unfortunately, there is nothing normal about this illness.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
If you have a yeast infection you shouldn't be trying to handle it with over the counter products. The ABX is causing it.
Call the office and tell them that you have one. They should prescribe diflucan for you or some kind of anti-fungal.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
no joint pain here either. you said you had ticks bites, did you get any rashes?? did your symptoms start shotly after you being bitten??
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
No erik I never had rashes or rings. I had two
that I pulled out in three years that I know of.
No symptoms after either bite and negative Elisa
so my GP did not treat them. The second Tick was
tested and came back as a lyme tick. I told this
to the LLMD but he assured me that not every
lyme tick bit transmits lyme.
ABX--I will call them again and ask for the
diflucan, giving it another day. It seems to be
clearing up a bit now. Thanx for your help
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said: "The second Tick [that had been attached] was tested and came back as a lyme tick.
I told this to the LLMD but he assured me that not every lyme tick bit transmits lyme. " ----------------
Not every tick is infected but an infected tick that bites someone WILL transmit the bacteria.
Not every person bitten by an infected tick would necessarily become ill - or become ill at any particular time (depending on several factors), but, for crying out loud, you are. The dots connect. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by annier1071: The second Tick was
tested and came back as a lyme tick. I told this
to the LLMD but he assured me that not every
lyme tick bit transmits lyme.
Please tell me you mis-translated what this doctor said. That's not at all what he told my brother-in-law.
Posts: 822 | From midwest | Registered: Apr 2009
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onbam
Unregistered
posted
google ldseronegativity. even the western blot misses a ridiculously high percentage of cases.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
The percentage of people who get the rash is low. And if the tick bites you on your head, assuming one is not bald, you will most probably never see it.
It's symptoms that tell you what is going on and it could take months or even years for those symptoms to get bad enough to connect the dots.
I went 14 years and managed relatively OK with on and off issues but I was still active and living life, until a period of terrible stress literally made me non functional. Then the journey began as to what was wrong and all the ducks who never thought it could be Lyme, perhaps, CFS or FMS.
I shutter to think where I would be if it were not for the internet.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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quote:I went 14 years and managed relatively OK with on and off issues but I was still active and living life, until a period of terrible stress literally made me non functional. Then the journey began as to what was wrong and all the ducks who never thought it could be Lyme, perhaps, CFS or FMS.
i have the same experience, my muscle pain never went away. my doc told me "it's because of hashimoto disease" - i went through very different NEM's like high dosed magnesium, chiotherpy for over a year but nothing helped.
i wonder why lyme is sometimes so "medium" in the strenght. i still did a lot of things while feeling very ill but i never thought that it's lyme. i had a suspicion in 2005 but the bloodtests were negative so i though it's not lyme... my doc isn't an idiot but he isn't informed about lyme. it's not his fault... it's the fault of the doctors who said "there's not chronic lyme" and wrote those guidelines...
Posts: 159 | From Germany | Registered: Nov 2010
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quote:Originally posted by annier1071: The second Tick was
tested and came back as a lyme tick. I told this
to the LLMD but he assured me that not every
lyme tick bit transmits lyme.
Please tell me you mis-translated what this doctor said. That's not at all what he told my brother-in-law.
--or is this supposed to read "not every DEER tick transmits Lyme--- ??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
annier,
Your LLMD IS LL, that is for sure (I know who it is). It sounds like perhaps you misunderstood him, or you are just doubting, because you don't have a clear test result.
your symptoms and history tell the story. YOu need treatment, need your questions answered, and you need more than one abx, assuming you can handle more. And you need patience. And help in dealing with symptoms from the abx, like an antifungal, the best probiotics, taking your sensitivity into account, etc.
That may be why you weren't given more than one abx right off the bat.
Going to a neuro, unless they are LL, will be very counterproductive, as they don't believe in Lyme usually, and will give you a diagnosis and meds that are not good for Lyme patients. If you need the name of a LL neuro, I have a few. They aren't in NY, however, CT.
Posts: 3771 | From around | Registered: Mar 2008
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