posted
Have had lyme and possibly babs in the past.Have been treated with biaxin/plaq.,tetracycline etc. Currently feel like im relapsing with some new symptoms , wondering how many are experiencing similar.
Seeing a non llmd gp now, test negative of course quest/lab corp. currently . So he went on to test for other autoimmune issues.
Have ruled out lupus by skin biopsies & ana and all inflamatory markers are negative .Only thing I have showed in the past that has been elevated c3d immune complex panel was in the 60s.
Seeing a neuro soon as theyre onto a possible ms diagnosis its sounding like .
Main concern is the new(er) neuro sympts.
Vision stuff has been worse,see black pen dots intermit. spots , floaters, visual snow, flashes of light intermit. in lower field (complete eye exams always normal) ,flashes can sometimes be exacerbated by exercise ,
phantom type images in peripheral vision, trouble with sharp lined patters on shirts etc , or anything with a lot stripes seem to bother me,erectile issues
Excema blotchy rashes on the backs of my hands , diziness , mouth ulcers , sore shoulders , stiff neck , sore lymph nodes under chin.Repeat sinus infections.
(breaking up the post for easier reading for many here)
posted
Updating more info later. Was treated by dr p. in ct prior . But due to his crazy wait now im searching for any other local llmds. CT, NY, NJ is ok . Can pm me if anyone has any suggestions are appreciated
Posts: 5 | From CT | Registered: May 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you write a post in Seeking a Doctor forum because that is where people with info on doctors look to help others.
Right now, you are posting in the Medical Questions forum.
I would not go to non-lyme literate doctors if I were you. Such doctors commonly tell people their symptoms sound like MS and other illnesses, but a lyme literate doctor knows that they are lyme disease.
You see, there is absolutely no difference between MS and lyme disease--that means the test results, MRIs, etc. will all look identical.
In fact, many lyme literate doctors believe that MS is really lyme disease and not a separate illness at all. I happen to agree with that. There are some really top notch researchers who have been saying this for the last 30 years.
If lyme can account for all of your symptoms, why chase rabbit trails with doctors who will come up with 4 or 5 different diagnoses to account for all of your symptoms.
If you have/had lyme, you will not have any peace of mind as long as you go to doctors who don't know much about lyme disease (and what they DO know is basically all incorrect!).
People do much better when they leave these doctors behind and just visit doctors who really understand the very complex illness of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Agree you need to see a Lyme-treating doctor. MS symptoms can be a presentation of Lyme.
Sore lymph nodes - could that be bartonella?
For eye symptoms, I drink mangosteen juice, an anti-inflammatory juice which stops the symptoms. I drink the Mango-Xan version as it's the most tart, about an ounce a day. Found at health food stores and online. We're all different in how we respond to remedies.
Posts: 13116 | From San Francisco | Registered: May 2006
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Thanks for the pm , appreciate it . Yes I need to get into and see an llmd . Good question on bartonella , I have never been tested for it . Havent looked into a ton of the symptoms. On another note I don't see much info on erectile dysfunction. Assuming lyme can cause it.Are there any other who experience ed of some sort.
Posts: 5 | From CT | Registered: May 2017
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TF
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posted
Look at pages 9-10 of Burrascano Guidelines. It is a list of lyme symptoms. On page 10, you will see erectile disfunction.
Irritable bladder or bladder dysfunction Erectile dysfunction Loss of libido
And, in all my years in the lyme world (14 years) every person who has lyme also has bartonella--every single one.
So, you really should read the page on bartonella-- page 24 and page 26. And, you should have been tested and treated for it when you were treated for lyme. Good lyme docs treat for all of the "big 3" meaning lyme, babesiosis, and bartonella regardless of test results.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
You will continue to accumulate neuro symptoms and other types of symptoms because your lyme/bart/babs is progressing.
You MUST get to someone very good as soon as possible. And, don't let this happen again. I don't know why you stopped treatment with Dr. P. in the past, but perhaps you stopped before you were cured.
Perhaps Dr. P. will not make you wait in line for 1 year since you were his patient before. I strongly suggest you call there and see if they will fit you in.
He may not even charge you the new patient fee for first appointment. Some lyme docs will treat you as an "old" patient and do these things for a person.
Dr. P is so highly thought of, I sure hope he will take you back right away. Just in case he won't, I am sending you the name of a top notch doctor that I suggest you contact.
Jump on this!
I am female. When I had lyme, it totally destroyed me in the sexual area--with terrible bodily symptoms that made sex impossible and in other ways. It shrunk my ovaries to nothing and stopped them from producing all female sex hormones.
So, lyme is well capable of doing the ED thing and much, much more.
You don't have MS and don't need a neurologist. If you go to one, I predict you will be very sorry. They always or nearly always treat lyme patients TERRIBLE. I still remember how the one I saw treated me.
You can get your normal life back, but the doc is the key. I am a success story. Lyme stole 5 to 10 years of my life. But, no more. I am 12 years symptom free, enjoying my life, same brain and same life I had BEFORE lyme disease.
That can be you also.
Study the Burrascano Guidelines section on "Rehabilitation." It tells you that to prevent a relapse, you MUST boost your immune system. You do this by doing a 1 continuous hour program of weightlifting every OTHER day. You do a full body workout each time using light weights and many repetitions.
This is the key to not getting this disease back again ever again. Antibiotics are not enough.
See this quote:
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories." (p. 31)
He then goes on to explain how this specific exercise--weightlifting for 1 hour every other day--is likely boosting the immune system of the person so that these horrendous diseases are not able to come back on you.
The lyme doc that cured me told me at my very first appointment that I would NEVER get rid of lyme if I did not do this exercise program. It worked for me wonderfully. And, others I know who are cured give the credit to weightlifting (or pilates) for the fact that they have never relapsed.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks again for all the helpful info . I have my western blots from a lab called imugen . That I did test positive with going to scan and upload . Im a bit confused on deciphering them .
Posts: 5 | From CT | Registered: May 2017
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Can anyone read these better then me . Interpretation looks like something is going on .
Posts: 5 | From CT | Registered: May 2017
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TF
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posted
Chris, first know what kinds of tests were done on you. The 4/12/06 is an EIA test. THe 5/1/08 is also an EIA test.
Here is what you have to know about an EIA test: It is a screening test only. See what 2 famous lyme doctors say about the EIA:
"It's important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive.
I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.
For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to ``screen'' for borreliosis, even though it is a ``confirmatory'' test. "
from Dr. C's explanation of the Western Blot found here:
Dr. Burrascano remarks on screening tests like the EIA this way:
"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots..." (p. 7)
So, what you learn from this is that the times you were tested by EIA, you were tested with a lousy test that lyme doctors know not to use. This test is so lousy that it can say you are negative for lyme when a Western Blot test will say you are positive for lyme.
So, the test you want is the Western Blot.
Your 4/12/06 EIA showed a weak positive on the IgM. It is called "equivocal" which means not negative but not positive enough to be called positive. So, this is some evidence of possible lyme by the lousy EIA test.
The 8/10/06 EIA showed no evidence of lyme. Since the EIA is such a lousy test, this is a common result for those with lyme.
The 5/1/08 EIA test now had your IgM at a level of 1 which is no longer in the normal range but now actually positive on the IgM for lyme. However, if you had lyme in the past and were treated for it, then this would be a normal reading for you.
So, did you have lyme and were you treated for it in the past (meaning prior to 5/1/08)?
If the answer is that you were not treated for lyme prior to 5/1/08, then this test result is significant and indicates lyme disease.
But, if you were treated for lyme in the past and cured of it, then this result means nothing. (I still test positive for lyme 12 years after being cured and symptom-free.)
The message I want you to get, however, is that all of these tests are considered worthless by lyme specialists.
Now, you have a few other tests with numbers in 2 columns. These are called Immunoblot IgG.
These are the IgG part of a Western Blot. A Western Blot, however, always has 2 parts: IgG and IgM. With chronic lyme patients, it is normally the IgM that will be positive. "Chronic" means you didn't just get bit a week ago but likely a year or more ago, more or less.
"But actually, more IgM blots are positive in chronic borreliosis than IgG." That's a quote from Dr. C., same lyme doc as quoted above.
So, it looks like you have just the IgG half of some Western Blots. Do you think you have the IgM Immunoblots somewhere?
On your IgG pages, you have all of these number which represent various "bands" by molecular weight. Read Dr. C's Explanation of the Western Blot to understand this.
Near the end, he tells which of these numbers is significant for lyme. Burrascano tells the same on page 7 of the Guidelines.
YOu have many band numbers listed that I have never seen reported. They are not lyme bands is my guess. Do you think you were tested for something else like syphilis, etc.? Many, many of the band numbers are not lyme band numbers. For example:
85, 69, 77, 56 on the 4/12/06 IgG. There were 2 bands on that test that ARE lyme bands and those are 45 and 41. I am assuming here that when they put a band number on your test result, that likely means you were positive on that band.
On the 8/10/06 Immunoblot IgG (meaning the IgG portion of a Western Blot) you had bands 58, 34, and 39 which ARE lyme bands, and 72 and 61 which are not part of a lyme Western Blot as far as I know.
So, if the listing of these bands means that they were present in your test, then you have band 39 which is a very significant band for lyme showing up on that test. See what Dr. C says about band 39: "39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
In plain English, similar/related diseases such as relapsing fever cannot possibly cause band 39 to show up. Only lyme can cause a positive or present on this band.
So, this is very significant IF what it means is that band 39 showed up on the Immunoblot test for you. I think it is common sense to assume that the numbers listed are the bands that your blood reacted to or showed up on as present. So, this is a good indication that you had lyme at that time or some time in the past (and were treated for it and "cured").
Then, on 5/2/08, your immunoblot IgG showed the following bands which point to lyme: 41, 66, 30, and 58. Dr. C says that 30 is the same as 31 and that 66 points to lyme. Dr. Burrascano does not consider 66 as significant for lyme. Nevertheless, this test is showing some evidence of your body's reaction to the lyme bacteria.
What were you told regarding all of these results?
I am not familiar with the lab that was used. Lyme specialists often use Igenex, and that is the lab we see so much more often--and it is a complete Western Blot IgG and IgM panel. So, I could be making some mistakes in assuming what these test results are, but it is not too likely that these are mistakes in understanding what they gave you.
If the lab has an interpretation page for the Immunoblot IgG, check their website, that should be added to the images you uploaded so we can be sure of what those tests mean.
Each of your Immunoblot IgG test results list a number of bands that are not reported for lyme testing includng 74, 77, 61,and 72 so it would be good to know if these were strictly lyme tests or tests for other diseases.
The Western Blot is used for other diseases besides lyme.
As I said above, it is more often the IgM results that will be positive for a long-time lyme patient. If you could post any IgM results, that would be more helpful.
Also, please know that once a person has had lyme and been treated for it, none of these tests can possibly tell you if you still have lyme. You must go by symptoms if the person had lyme in the past. (Or a totally different test--one that looks directly for the lyme bacteria.)
You will understand this a lot better if you read ALL of Dr. C's explanation of the Western Blot. It is the best explanation for the layman that I have encountered.
Please understand that these tests are NOT looking for lyme itself. Rather, they are looking to see if your body made antibodies to lyme. Antibodies are a reaction to the presence of lyme in a healthy person with a functioning immune system.
The trouble is that a person sick with lyme doesn't have a normally functioning immune system. It is suppressed or compromised by the lyme. So, many of the sickest lyme patients get negative Western Blots. Then, when they get good lyme treatment and their immune system starts to recover, they often get positive Western Blots.
If you have many lyme symptoms, that is the greatest evidence of lyme in your body. If you want a good lyme test done, get a Western Blot from Igenex. Costs about $200.
Just know that these tests cannot be relied upon to make a diagnosis. You must use medical history, test results, symptoms and your reaction to a trial course of lyme meds to make the final diagnosis. Burrascano says that on page 7 of the Guidelines.
Hope this helps you!
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