Hello everyone. Im new here and just wanted to introduce myself. Im thankful to find a group who understands how I feel. If one more person calls me a hypochondriac I may be blogging from prison!I was diagnosed with Lyme July 17th. I have however been undiagnosed and sick for years. Drs ran a basic Lyme that kept coming back POS but the Western Blot said Neg. So I was told I was depressed and go home to take Cymbalta and take a yoga class to feel better. I went to my Neurologist to discuss the pain Im in and ran 4 Lyme titers everything coming back POS. Ive been on Doxy since then for a 6 week run. I am more sick than ever. Is it common to feel worse on meds?
Posted by Ocean (Member # 3496) on :
Leigh,
I think you are just a hypochondriac.
Just teasing! I'm glad you have found Lyme.net...you sound like many of us who were sick for years with either bogus diagnosis' or the hypochondriac label. It's very sad.
Yes, it is ABSOLUTELY normal to feel worse. As the bacteria gets killed off, it causes a Herxheimer reaction where your immune system all of the sudden 'sees' the bacteria and starts attacking. The combo of the immune system staging an attack and the toxins released from the dying bugs makes you feel pretty sick.
Hang in there, you are doing great! Do you have an LLMD???
Take care, Ocean
Posted by Leigh Rivera (Member # 21801) on :
LOL! I think I will fit in here! Ocean, my Neurologist is amazing. Im assuming he is LLMD since he is the only one to test all titers. He said he had Lymes as well, so Im praying Im on the right track. Im learning everyday and Im armed with questions for my next visit which is the end of this month. Im on 400mg of Doxy and Im worried about what its doing to my body. But the thought of dying bugs in me throwing off toxins is a thought I never had until I read your reply! YIKES! ARe they like parasites? I was watching on Animal Planet Monsters Inside Me all about parasites and it flipped me out! I have no idea what to expect from all of this and Im worried about a potential PICC line. I cant do that. I have 5 exotic birds to care for and they would find that I.V to be a toy to rip out of me. Can you explain to me what all of this Igm type numbers are in your sig? Please feel free to tell me all here. Im totally in the dark!
Posted by DaveNJ (Member # 17362) on :
Leigh,
welcome....you now have your answer. Now get ready for the fight. There are lots of us on here who will give support when ever you need it. There is lots of fact and some fiction on here. You'll learn over time what info you can use and which to ignore.
I too am from NJ so I got your back.
Dave
Posted by Vermont_Lymie (Member # 9780) on :
Leigh,
Welcome!
It could take more than a 6 week course of doxy to get better again; you need to be checked out by a lyme literate doctor to get tested for co-infections and to have proper treatment for lyme.
Hang in there; it is most common to feel worse when starting treatment due to the bacteria dying. Please read as much as you can, knowledge is power with this condition!
Posted by Leigh Rivera (Member # 21801) on :
Thanks Dave! Im in Westampton. I was just telling my husband about this forum. He suggested I ask, how do you know when your DR is LLMD?
Posted by DaveNJ (Member # 17362) on :
at the end i think most of would say that the acknowledge the ILADS philosphy and treatment protocal. search this site or Google Burrascano 2008 Guidelines and you will find a paper which you must become fairly informed about.
It helps if they are amember of ILADS.Please check ILADS.COM. i'm in Cranford by the way.
Dave
Posted by Leigh Rivera (Member # 21801) on :
Dave Im on that site now but cant seem to find Drs who are certified. If a Dr does not list that criteria, how do you question that? I mean, most Drs will say oh yeah sure I am! I havent seen my test yet. They prescribed me the Doxy the same day I had the test. So I started meds before I was dx. They called and said the test are coming in pos so stay on the meds! So, Im stumbling along here and learning as I go. I cant believe only some Drs are literate in this! People are being sent away crazy when they are really sick!
Posted by Leigh Rivera (Member # 21801) on :
oh holy crap Dave. I found the Burrascano info. My head is in a fog already trying to read. My Drs card just says MD. He was the only one to know the titers though. Guess Ill have to ask about the LLMD part?
Posted by DaveNJ (Member # 17362) on :
The only way to know i think is to ask. you are in charge now...as all Lymies are. maybe someone on here has better way to know if an Ilads list exists.
The fact they started meds before a test came back bodes well. That is exactly what did not happen for me.
Most doctors will not say they are ILADS....this is a controversial choice so it is not taken lightly.
once you get past all the noise you will realize you simply need to know if your meds are working and focus on getting well. if they are working you will get sicker...in most cases people will have a Herxheimer reaction.
Dave
Posted by Leigh Rivera (Member # 21801) on :
I have to say I am 100% sicker over the past 3 weeks. Pain in every joint. It starts with my finger, knees and toes feel cold and wet, then explosive pain, followed by burning. The knee pain almost took me off my feet! So Dave this conversation has me wondering, does this specific pain mean its in my joints for good? Today I thought I was gonna have a heart attack and desperately needed to lay down after a little exercise. My head was in a fog. I have a lot of reading to do. I will also say my Dr is exceptional. 3 years ago he found a tumor in my thyroid that 2 other Drs missed. And again, I went to him for pain management for neck and back injury. He thought I had M.S. Then we had a deeper discussion and he said "Ill bet you have Lymes" He told me he had it too so I guess all of the knowledge is fresh for him. I really trust this man. He is the only one to help me out of many who just sent me off calling me depressed. Very insulting. You guys have been great so far! thanks so very much! I will torture you all very frequent;y!
Posted by LostnAfraid (Member # 21104) on :
Leigh,
This group is amazing! Like you I was misdiagnosed because other things came up positive like Mono. It was my chiropractor who told me to insist on the Lyme test, then it was POS.
When I was on Doxy I had those same symptoms. It is true Doxy is the basic abx used but becareful. Turns out I am allergic to it.
Did he tell you to make sure to take Probiotics as well??
Also by adding some additional supplements it will help. For instance, I take Cat's Claw, Olive Leaf and Colloidal Silver (liquid). Good combination and has worked for me. Not saying it will work for everyone. Always a good idea to take the probiotic.
I experienced INTENSE Herx for the first 6 weeks as well. I am on Azith and Bactrim and Flagyl. The Flagyl is strong stuff but I am hoping that this time won't be as bad.
Hang in there! The first part is almost over!
Cynthia
Posted by liesandmorelies (Member # 15323) on :
Leigh,
Welcome to the group! You will fit in great here. We get a little zany at times, but this is a fantastic group of people to run things by.
I was misdiagnosed for a long time.
I herxed for the first few weeks too. You will get through this. Before long the horrible herxing will be a thing of the past.
Think of it as a good thing that you are herxing as it proving you have Lyme and are killing the little critters(Bugs).
Again, welcome!!!!! =)
Posted by Lymetoo (Member # 743) on :
Guess what Leigh!!?? You're HERXING!!! Now you're a veteran!!
Yes, make sure you are on high quality probiotics like Theralac. www.theralac.com
Did you have a Western Blot test through Igenex yet?
We can help you find an LLMD if you need one. An LLMD will treat you until you're well... even if it takes several months. A regular dr will not.
Go to Seeking a Doctor here and we'll help you find a dr. We have an "approved" list.
Posted by aklnwlf (Member # 5960) on :
Welcome to Lymenet Leigh!
Ditto to what Lymetoo says. Find an LLMD by posting an inquiry in the forum Seeking a Doctor.
Just say something in the title like: Need LLMD in New Jersey.
I wouldn't waste my time on any doctor that isn't one. From what I've heard here, they're notorious for under treatment.
I went through about 2 1/2 years of treatment and everything before that was a total waste of time and money.
Glad you found us here and the best of luck to you in finding an LLMD and beginning treatment.
Posted by Leigh Rivera (Member # 21801) on :
Thanks everyone! YAY Im Herxing! LOL It has a name! Im cool with that. Its sad when you pray to have something just to get confirmation its not all in your head! Hurts like all heck though. As far as probiotic, I eat yogurt everyday 2 hours after my morning dose, does that count? Id this to counter yeast? What is Igenex? I havent seen my test yet but will get copies for sure. I know they did the Western Blot but not sure what method? I feel like Im learning Japanese here so please elaborate for me. Can I say the name of my Dr here? Oh and even though you all see LLMD are they first specialist like a Neurologist, or Infectious disease? This man is thorough or at least more thorough than any other md Ive been to. I have a million ?'s!!
Posted by Leigh Rivera (Member # 21801) on :
Cynthia what is "abx" re the doxy? Im allergic to penicillin and emyacins. Im having some issues with the dixy but not bad as long as I stay out of thr sun. When I go out its like a blow torch on my skin. My nose burnt to bleeding after about 20 min the first week.
Have any of you been on a PICC?
Posted by Lou B (Member # 64) on :
OK, so you're a hypochondriac ... there's lots of them here and we love them all ... we're a family of Lymie hypochondriacs ... welcome to the family!!!
Posted by Pinelady (Member # 18524) on :
Leigh glad you found these good people. Doxy is a
no no with sun. If you doctor did have lyme and
he did treat, he knows it may not be gone and can
surface later like syphilis can. That is why we
seek LLMD's. Someone who knows this, believes
this, and will treat to get rid of. It will
require a lot longer than 6 weeks. As for the
parasite thing, the borrelia are capable of
boring into every cell and as such can hide in
the system. Where they become cyst like and
antibiotics will not get. This is very much like
latent syphilis. But they are bacteria. Good Luck
with your treatment and there are many on this
site who can help you with the herxing. You need
to also be on something to prevent yeast and
probiotics to keep the bowels in check. Very
important. When I found out why I had to be sick
so long after picking up my old test results, I
was furious. I had let my life be in someone
elses hand who had no idea about this disease,
and whats worse did not want to know about this
disease.
Posted by just don (Member # 1129) on :
Hi Leigh, And NO your not a hypochondriac,whatever they are!!
(See I am bucking the tide already!!)
Tell tale sign of a NON -LLMD,,,the doxy dosage,,whats yours??
If its the light dose,,,go find a regular LLMD.
If its the heavy dose and he wants to treat you till your well,,,stay the course.
Remember the biggest thing is you dont owe docs anything but there bills,you can change down the road.
Be thankful you have several in your area to choose from. around here you have to drive 500 miles and have a selection of 1.
Posted by Leigh Rivera (Member # 21801) on :
JD, Im on 400mg of Doxy. I take 2-100mg each in the AM and 2 at night. When I had my rx filled I said wait a min, this is a huge dose. So I called my pharmacy. The pharmacist said, yeah this is a really big dose whats it for? when I said pos Lymes not officially dx yet. He said he had seen most Drs start with only 200mg for prophylaxis so this seemed very high to him. With all that said I guess Im on a whopping dose. Im in a world of pain that I didnt have before starting it aka as herxing I guess and thats a good sign. I really feel good about this Dr even though its early on. He saved my life 2 years ago and I have an intense trust in him.
Posted by DaveNJ (Member # 17362) on :
Leigh,
you had asked me a question whether the pain you know have is sign that it will be permanent. The answer is no although you may have to fight through it for months.
Alos ...no yogurt is not enough. You need a probiotic witha higher count than yogurt,. I think yogurt has 1 mil count. The pobiotic i take (ultimate flora) has 50mil.
400mg a day means your guy does in fact know what he is doing. how long is it prescribed for ?
Dave
Posted by Leigh Rivera (Member # 21801) on :
ok so Ill look into taking probiotic! I can honestly say though, that my IBS has been better on the doxy and I have no yeast issues YET (fingers crossed) My first run he presc is 6 weeks, Friday marks week 4 for me. Im assuming he will do test after that and see how I feel. In out initial Lymes conversation he was telling me that IV works the best but insurance wont pay unless you have 6 pos test resukts after oral treatment. I think he said 6. Anyway, I really dont want to deal with the PICC!
Hey, what happens if you dont take probiotic!?
Posted by just don (Member # 1129) on :
sounds like he is real deal!!400 is GOOD!!
MY first question at your NEXT appointment is,,,what co-infections are we fighting? How we gonna treat those??
All that 'testing' talk makes me wonder.(tests are SOOOOO bad) Wishing and hoping for your regained health is--just don--
Posted by DaveNJ (Member # 17362) on :
lack of probiotic will result in yeast infection. i agree 6 weeks at 400 is a good start....but the tests would concern me. They are useless...so i;'m not sure what assessment your Dr hopes to make...if you are not feeling 100% for at least 2 months you must continue TX.
Dave
Posted by Leigh Rivera (Member # 21801) on :
yes JD we are on the same page, that is my first ? plan! The testing I refer to is blood work to see what critters are still in me. When they called to tell me I Was pos the nurse said most of the strains are coming back POS. Does that mean co inf?
Posted by bettyg (Member # 6147) on :
welcome leigh
please break up your long paragraphs into SHORT ones so we extremely neuro lyme folks are able to read and comprehend; use my guidelines below ok.
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!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
I need to get my husband to read your reply. Its a lot of info.
Im feeling overwhelmed.
Do insurance carriers NOT pay for these test?
Posted by Pinelady (Member # 18524) on :
Igenex requires you pay and send you info for
reimbursement. Some docs think the yeast medicines
can help prevent cyst formation. But whatever it
can not hurt.
Posted by Leigh Rivera (Member # 21801) on :
How are they different from Quest?
Posted by DaveNJ (Member # 17362) on :
Quest and Labcorp only test for about 3 or 4 strains . Meanwhile something like 100 strains exist.
Dave
Posted by Leigh Rivera (Member # 21801) on :
NO WAY! O brother. I thought 4 was a lot and a miracle that I found a Dr who knew them! Dont they have to test for what the Dr calls for? This is a nightmare.
Posted by DaveNJ (Member # 17362) on :
don't mix up bands on the westernblot with the strains of Lyme...labs are limited by their own technology. MDL and Igenix are the 2 best. Quest and Labcorp are wastes of time.
Dave
Posted by Leigh Rivera (Member # 21801) on :
I mixing it all up! I still havent talked to my Dr and wont until the 31st.
So I have no idea what bands or strains or what I have.
All I know is that it feels like someone is beating my knees with a bat! And the sun has become a blow torch.
Hopefully on the 31st the Dr will spell it all out for me.
Ill have my lab results then so I can cross ref the info you guys are giving me.
Posted by DaveNJ (Member # 17362) on :
Leigh,
if you need anything or want to chat over the weekend send me a PM.
Dave
Posted by Leigh Rivera (Member # 21801) on :
Thanks Dave. I appreciate the support. Im trying to learn here but since I dont know yet exactly what Im dealing with its a little overwhelming.
So you bet, I will be needing your help once I have paperwork in hand!
Posted by Cap67 (Member # 21923) on :
Hey leigh, I am also new, although I have not been dx. as positive , I had one blood test which was negative and I let it go for yrs but the more I hear of others who have tested positive, I can relate to the stories as they sound alot like mine. I have been called that for yrs. I understand how you feel...I have fibro and Rheumotoid arthritis and have many symptoms of long term lymes, Im not sure if I am making a mountain out of a mole hill, but I have a suspision I may have it. anyway, just wanted to say hello and welcome....Cap
Posted by Leigh Rivera (Member # 21801) on :
Hey Cap!
I had so many NEG test results I thought the last one was another waste of lab fees.
I have been totally laid up since my last post in horrible pain and fatigue.
Today I feel like I might be making a turn for the better. Im actually cleaning the house! But boy do my hands hurt.
Last weekend I developed some strange burn or rash on my 2 pointer fingers. The left one has actually cracked open and has a stain like the edge of burnt paper.
But its dark burgundy in color. My knuckle is raised. Its so painful.
Today I stared week 6 of my doxy. Next Monday is my DR appt.
Where this journey will take me is beyond me at this point. I have such mixed emotions.
Posted by Cap67 (Member # 21923) on :
I am glad to hear you seem some better, with the exception of those fingers, Hmmmm????
I wish I just knew what to do, I now have no insurance and cannot afford to persue this now.
I have some days I feel decent and others I feel absolutely horendous!! Some days I can function
and others I cannot. I am off the kadian and lyrica now as I cannot afford like 600 or more
a month. I am trying to get the lyrica back through an rx asist thing. I have tried just
using Darvocet/Ultram for the pain and it does help some but when that nerve pain starts it
doesn't touch it. I am trying to get the pain doc to at least work with me and give me some
of the MSIR for those times cause it helps. However he may refuse to see me anymore cause
I went to my primary and got the other stuff. I was not trying to go behind his back, I just
never thought I would be going back there. My primary does not want to do the MSIR, he wants
me to go see a pain doc for that. His fee is 116.00 for each appointment though!! I cannot afford that every month and my meds!!!
what do these people expect???
sorry for rambling, hope your better!
Posted by Topaz (Member # 20216) on :
Leigh, I just wanted to let you know that when I
was on my initial 7 week doxy dose, my pointer
fingers did the same exact thing you are
describing!
It was down the sides of my pointer fingers, the
side towards my thumb. Then
down around the largest knuckle on my hand a bit.
Aching and tingling first, then the rash,
which appeared stained and would crack in certain
spots. It also felt a bit itchy.
I attributed it to sun damage from being out
gardening without gloves. I was very good about
wearing a hat, long sleeves, slacks, just not the
gloves.
Not 100% that it was from the sun but I sure as
heck don't know what else could have caused it.
Regardless of what caused it, it stuck around for
little a while(maybe a couple of weeks?) then
gradually went away.
Posted by Tincup (Member # 5829) on :
![[Smile]](smile.gif)
![[hi]](graemlins/hi.gif)
![[Big Grin]](biggrin.gif)