Hello! I was just diagnosed last week with lyme disease using the Igenex test. It has gone untreated so long that it has begun to hit my central nervous system i.e. heart and kidneys. I was wondering if anyone could give some words of advice? I am currently seeing an LLMD, but would like to hear some other peoples' experiences. Thanks!
Posted by bettyg (Member # 6147) on :
welcome sar bear
would you send me a private message back, it's the 2 people standing together, 2nd box to right of my name?
please tell me full name and city/state of your llmd if you would.
fyi, i am one of a handful who send out llmd info to newbies and oldies! that's why i'm curious.
example, me ... 39.5 yrs. chronic lyme 34.5 yrs. MISDIAGNOSED BY 40-50 DRS....
lymetoo/tutu....50 yrs. chronic lyme and treated in the last 6-10 yrs. she will tell you her own story. but MANY LONG-TIME MISDIAGNOSED folks on this board!
would you be more specific what type of heart problems you are having as well as KIDNEY problem?
a newbie just posted yesterday that she was told she was having kidney failure.
many heart problems of every sort.
if you stay up late, not many on here now but you could use the SEARCH feature. click on search found at top.
type in the medical term they used for you medical text any date leave membership no. blank; click search
read all posts/replies; if none, hit BACK button change to subject line from text; click search again. do same thing ....
i'll paste my welcome letter below with valuable links there. hugs/kisses on what you are going thru.
*****************************
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. ------------------------------------------------------
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 get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ 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
May I ask what were you IgeneX results?
Posted by kellyjk4 (Member # 19731) on :
Welcome!
I'm fairly new here myself, but you'll find tons of information here.
Everyone is very helpful and supportive.
I'm so sorry you're having problems.
I'm 40 years old, and have had symptoms since I was about 10.
I've been diagnosed with Borrelia, Babesia and Bartonella.
Finally found a wonderful LLMD (through this site) and began treatment in May.
It's been slow going, as I herx pretty violently, but I'll get there.
Good luck to you!
Posted by Leelee (Member # 19112) on :
I think I was infected 20 or 30 years ago. I am 53 years old now.
In my quest for an answer to all my health problems I have been to maybe 40 or 50 doctors. I knew I was physically sick, but couldn't convince anyone that I was. The fact that I had perfect blood work and none of my other testing ever showed any abnormalities did not help me to convince the doctors that I was suffering.
Eventually I was diagnosed with depression, post-traumatic stress disorder, bi-polar tendencies, anxiety and panic attacks. I agree I had all those issues, but something organic was causing them. I just knew it.
Through luck and the internet, I guess, I found Lyme as a possible reason for my sickness. It took a few more years until I found Lymenet and an LLMD, but once I did, things changed rapidly.
Almost immediately after starting on abx I saw incremental improvement in my symptoms. That was starting this past April. I have a long road ahead of me, but I can now see the future. Before I wondered if I was dying.
Lymenet is a wonderful place to come when you need a friend, want to talk, ask a question or learn.
I wish you all the best in your journey toward better health. You are under the care of an LLMD and that is a major, good thing! Posted by Pinelady (Member # 18524) on :
Sarbear may I ask if what you were previously diagnosed with. Sarcoidosis? There are many things
to be found here to help relieve symptoms. As well as people who are very supportive in your journey.
One size does not fit all in Lyme and trial and error works for most. We are not all the same
sadly this is why what may help you, may hinder someone else. All we can do it try and learn.
Glad you have a LLMD and look forward to updates on your road to wellness.
Posted by SarBear (Member # 21196) on :
Thanks everyone for your thoughts and encouragement. BettyG, you already know me. You have visited my caringbridge site and have been very helpful :0) I am still awaiting for my igenex results to be sent to me via mail and once I receive them I will post them and maybe you can help me sort through what they mean.
Posted by bettyg (Member # 6147) on :
sar bar, yep, NOW i know who you are!! glad you joined here as i recommended!!
yes, i know who you are going to; good llmd !!
sar, please explain about your heart and kidney problems; we have many RNS here with extensive knowledge and so very helpful!
when you post your western blot results, post only POSITIVE & INDETERMINED; not the negatives ok ***********************************
see you on your site too Posted by hope4sofia (Member # 20577) on :
Hi and welcome,
I was also just recently diagnosed and have been sick for about 20 years.
I would really like to hear more of your story; how your were diagnosed and how treatment is going.
I just started treatment in June.
Posted by SarBear (Member # 21196) on :
BettyG asked me to expain my heart and kidney problems. My heart problems include high blood pressure, tachycardia, and severe palpitations/irregular heartbeats. My kidney problems are pretty extensive. My body does not absorb the liquids that I take in orally, so I have to have a PICC line to do daily infusions of saline between 1 and 2 liters. If I do not do this within a matter of one week I get so severely dehydrated that my heartrate nears 200 with uncontrolled nausea and vomiting.
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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.