posted
Does anyone have any ideas why I feel this way? I seen an LLMD and had a DNA test for Lyme Disease and Coinfections. Lyme Disease came back negative but the Coinfections tests says its still pending cause they had to send it to a different lab. I had Lyme Disease in 1995 and haven't felt the same ever since. Took antibiotics for 30 days and cured it. Could I still be suffering from the damage that way already done to my body from the Lyme's back in 1995? I suffer from Chronic fatigue everyday, pain throughout my entire body, night sweats, can't walk right, I feel empty inside, I don't like doing anything or enjoy anything in life. I went to the hospital last night and all they gave me was percocet. It made me feel better and now I can move around and do things I wasn't able to do... like little stuff for example take a shower, clean the house etc. If i don't have Lyme disease could I be suffering from the damage it cause or does anyone have any clue as to what I could be suffering from?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You could not possibly have gotten rid of the lyme in 30 days. I'm not sure if you were treated in
l995 or just began treatment recently but it seems to me that you probably need to consider seeing another doctor for another point of view.
The symptoms you describe are those of undertreated lyme and possible co infections.
Perhaps you can give us a more detailed history and time line of your illness and the medications you have been on and we can then give you better feedback.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I agree with abxnomore, 30 days was likely not enough.
Lyme is a clinical diagnosis, known exposure + symptoms = Lyme Disease. Is your LLMD going to diagnose you based on symptom?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
When you say you had a DNA test for Lyme Disease, do you know what it was called? Was it a PCR? If it was a PSR test, then a negative test means absolutely nothing.
For a PCR to be positive, a part of the bacteria would have to be in the sample you sent and the likelihood of that in chronic Lyme can be tiny. It can be like looking for a pin in a haystack.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
DNA tests for Lyme (called PCR) are remarkably terrible at catching true cases of Lyme. Not only that, but testing for Lyme Disease diagnosis is recommended *against* by the CDC.
The CDC states that Lyme is to be diagnosed clinically, via symptoms, history, exclusion, and doctor's experience. Therefore, you need to see a doctor with plenty of experience diagnosing and treating Lyme and co-infections.
30 days is the arbitrary treatment protocol developed by a guidelines board (IDSA) that was recently under antitrust investigation by the CT Attorney General. The guidelines board was found to have serious conflicts of interest, and to have committed corruption in creating the board and subsequent guidelines.
The unfortunate truth is that 30 days is not long enough to treat Lyme disease, and if co-infections are not correctly idetified and treated as well, they can cause further treatment complications.
Also: just a suggestion if you would like to get more responses - there are many members here that cannot read large blocks of test. They have nuerological symptoms from Lyme that cause nystygmus and other visual disturbance problems that make it basically impossible to read giant blocks of text.
If you would like them to be able to contribute, you can edit your posts so that you have a new paragraph every few sentences or so.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I agree with everyone else who has posted above. Thirty days of abx would not permanently cure you of Lyme or co-infections.
Since you once were diagnosed with Lyme and now have symptoms associated with Lyme, it is entirely possible it is no longer in remission.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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blaze
Unregistered
posted
You could have EHS, like I do. Scroll to the "symptoms lists" in the first two articles below...
Check this graph out, too, and compare it to the severity of your symptoms and the decline of your health. It deals with the UK, but the US graph would be very similar...
In 1996 the Telecommunications Act of 1996 was passed in the US, giving the cell phone industry permission to place towers everywhere and anywhere, without argument. Even if residents were concerned about health effects, they had no recourse to stop the installation of these towers.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree and vouch to the fact it may take months,
if not longer now because you were most likely
under treated. Also know if your immune system is
down with lyme they may not find anything in your
tests. So I am glad you have a LLMD.
-------------------- 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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bettyg
Unregistered
posted
daddy, would you break up your solid paragraph into many short ones and double space between each paragraph so we neuro lyme folks can read and comprehend. use my guidelines below ok.
huge thanks from me/others ... hug
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"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." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Breaking up for Betty & others:
quote:Originally posted by aubsdaddy:
Does anyone have any ideas why I feel this way?
I seen an LLMD and had a DNA test for Lyme Disease and Coinfections.
Lyme Disease came back negative but the Coinfections tests says its still pending cause they had to send it to a different lab.
I had Lyme Disease in 1995 and haven't felt the same ever since.
Took antibiotics for 30 days and cured it.
Could I still be suffering from the damage that way already done to my body from the Lyme's back in 1995?
I suffer from Chronic fatigue everyday, pain throughout my entire body, night sweats, can't walk right, I feel empty inside, I don't like doing anything or enjoy anything in life.
I went to the hospital last night and all they gave me was percocet. It made me feel better and now I can move around and do things I wasn't able to do... like little stuff for example take a shower, clean the house etc.
If i don't have Lyme disease could I be suffering from the damage it cause or does anyone have any clue as to what I could be suffering from?
It sounds to me like you may have untreated co-infections. When co-infections are present, I believe they can also hinder your body's ability to fully eradicate Lyme.
What treatment were you given initially? 200mg/day of Doxycycline - 30 days? You say you were "cured", but still didn't feel right. How was it determined that you were "cured"?
Were you tested for co-infections at the time? I'm not certain, but I don't believe that physicians realized all the coinfections these little buggers could transmit back in 1995, so it's likely that you weren't even tested.
I'm thinking Babesiosis & Lyme, possibly Anaplasmosis as well. If you're seeing a Lyme-Literate MD, I'm sure that they'll be able to help you sort this all out & improve your condition.
Also, the "damage it does" shouldn't just continue to progressively worsen over 14 years without ongoing infection, as far as I know.
I hope you'll get some REAL relief soon.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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