First appointment with the Infectious Disease Doctor. (I know, I hear the screaming now, I am working on getting an LLMD, but felt I needed something for the time being.)
My results where as follows:
Elisa: positive
Western Blot: positive for the one indicating a recent infection. (I forget if it is the IgG or IgM) and "negative" for the long term Lyme Disease (only band 41 was positive).
Spinal tap: negative, normal protein and white blood cells, etc.
Result:
"You only had Lyme Disease for about 2-4 weeks before being tested. 4 weeks of Doxcycline 100 mg twice a day and you will be 'cured' of Lyme Disease.
The neurological problems you have been complaining of for several years have nothing to do with the Lyme Disease. You need to go back to the Neurologist for further investigation."
She ordered more blood work, from what I can read of the chicken scratch on the scrip, she ordered:
ANA RPR West Nile Virus IgM and IgG CVN V IgM & IgG (again - very hard to read the writing on this one) Parvovirus IgM & IgG CPK CRP
So, again today, I have taken one step forward and 2 steps back.
Posted by Keebler (Member # 12673) on :
- First: The ID doctor said: "You need to go back to the Neurologist for further investigation." (end quote)
Are you going to do that? (Hint: it will be Deja Vu and likely get you nowhere fast. Neurologists don't treat lyme and most deny its existence.)
I am so very sorry that someone did not tell you the pitfalls of getting a spinal tap. Usually, if you mention it, we will tell you why that's a horrible test and does not work to diagnose lyme.
We would have shown you excerpts to back that up and told you that a spinal tap is most often used to deny lyme treatment.
There have been so many spinal tap threads that it's hard to remember who has had that question. I'm just sorry that you did not post that question as it could have saved you much hassle and preserved your chances with some level of cooperation with regular doctors.
From your first sentence, my guess is that you did have information about ID (Infectious Disease) doctors but, understandably, you wanted to see for yourself. Sadly, though, your medical file will forever claim "no lyme" due to the spinal tap results.
Regardless of what other tests follow, that spinal tap will be a huge barrier to treatment through normal channels.
I am glad to see her order a tests for a couple other infections but she still sorely misses the mark. Other tick-borne infections should be assessed, too.
Sorry you had to go through all this. Good luck finding a doctor who is truly lyme literate. I hope you can soon. Take care. -
[ 07-13-2010, 07:35 PM: Message edited by: Keebler ]
Posted by sixgoofykids (Member # 11141) on :
Lyme is different than other infections. Many proven chronic Lyme patients are still IgM positive showing "recent" infection. It's because of the characteristics of the bacteria in how they replicate.
When I was IgG positive, my LLMD told me that was actually more unusual.
Posted by erikjh1972 (Member # 20964) on :
do yourself a favor and dont bother with either Dr. again. it'll be a waste of time and money if you dont have insurance.
Posted by 'Kete-tracker (Member # 17189) on :
Gottba LUV these ID ducks. They say something has nothing to do with something else... then they order all these exotic infectious disease tests 'cause they really Don't Know what's going on. (+ I think ID docs find it fun to order things like 'Parvovirus IgM & IgG'. )
Posted by t9im (Member # 25489) on :
HI LA:
I see you are a new member and I am as well (May of this year).
First I highly recommend Dr. B's Advanced Topics in Lyme Disease. This will help you understand how you need to be treated for Lyme.
Second as for the Infectious Disease MD or a neurologist or rheumatologist as well as most MD's they follow the Infectious Disease Society protocol which will not cure you.
It is my daughter who has Lyme (and Babesosis) and it took us 8 months and 9 MD's before finding a LLMD. Unfortunatley it was 6 months and we had gone the infectious disease, rheumatologist and neurologist route.
Good Luck
Posted by Keebler (Member # 12673) on :
- In case you've not yet seen this - it was posted for you in another thread on June 9 - but you may not have returned to read that. ------------------------
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity. . . . .
======================
From that thread, if you want to read others' responses about spinal taps: ---------
- Re: Paul's link. Yes, I've talked with her, too, many times years ago. I find her very well informed and I learned a lot from our conversations.
She would certainly be one option and she does know a lot about nutrition and about how lyme works. Just to let you know, there are some who have differing opinions. However, we all have differing opinions about lots of things. I'm not sure there is ever just one doctor who has all the answers for everyone. It takes a team. Learning is a process. -
Posted by Keebler (Member # 12673) on :
- Regarding your Western Blot: The lab that did your test probably did not do all the bands. More to consider here: --------
Be sure to read whole thread. This is just an excerpt:
This is a quote from Dr. C's Western Blot Explanation (at top of Medical section). It explains why the blood must be drawn on Monday, Tuesday, or Wednesday only:
"The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.
Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens. ". . .
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