posted
Can someone please help and let me know if I'm going in the right direction? If no what should I do and what am I doing wrong? In 1995 (I was 15 years old) I was diagnosed treated for Lyme Disease by my PCP. I took antibiotics (I think there were 7 of them) for about two weeks. My PCP said I was cured after that and seemed to feel better. All throughout my life I did lots of drugs. To this day I think I was self medicating myself. I never really did anything with the rest of my life but once a while have a jolt of energy but would slowly just go back down hill with fatigue and tiredness. I think the drug I was abusing were the only things keeping me moving. I even developed serious anxiety(which i take 2mg of xanax 3x's a day now and is still not enough!), don't feel depressed but sad, COPD, Emphysema, Acid Relux Disease, have a hard time urinating and pretty much else that is on the symptom list. I kept blowing it off until I was sick and tired of feeling this way so I got tested in 2007. My IGM test came back positive 2 out of 3 reative but my IGG came back negative expect for two that came back reactive out of around 7. My PCP sent me to a Infectious Disease Specialist and He informed me that because I had Lyme disease before it would always show up postive. Is this true? He suggested I see a Neurologist because he thought that I may have Fibormyalgia. I did not believe I had that so I blew it off since "I did not have Lyme Disease". I continued with my life with the same symptoms until around November of 2008 the fatigue followed extreme pain throughout my body and achy muscles and joints, my neck hurt (well my neck has always hurt), my back, my legs and pretty much everything. I have also developed migranes which I have never had before which last for 4 days. On Tues June 23 I asked to be rested for Lyme Disease... the doctor laughed at me and said "oooooook". Well i went back on June 30 to get my blood test results. Guess what? Lyme Disease again. My blood tests showed my IGG test negative but slightly different only 1 instead of 2 were reactive and my IGM test was the same postive with 2 out of three bands being reactive. My PCP said my Lyme Disease was Acute and I need to see a Infectious Disease Specialist and put my on Doxycycline 100MG (antibiotics). Im not sure if an Infectious Disease Specialist is the right idea because I believe I was wrongfully diagnosed by them before and its the same place I went to before in 2007 (its the only one around here). The same week i was diagnosed again i was rushed to the hospital sround 5 days later with intense pain and loss of mobility. The doctor took blood work but said he could not test for lyme there. He did a spinal tap in which he said he could not test for Lyme but could test for menagitis. My MRI came back negative excpet for a small cyst they found on the back of my brain. The doctor told me not to worry about it that it isn't doint any harm and will not get any worse. I don't know about you but that just scares me. My chest Xray came back negative also. I was then injected with 2cc's of Diluaded and sent home with 12 pills of diluaded until i see my PCP this Wednesday July 15th. I also have a sleep apnea test for July 14th because my PCP and my Lung Doctor think this is all coming from sleep apnea. No one seems to believe im in pain and I am started to think people just flat out think Im just a lazy person... but who can possibly just be plain old lazy for 12 years? Im 30 years old have COPD, empysema, severe anxiety, pain, fatigue, confusion, loss of memory, hard time concentrating and the list is just endless and endless. My life is on the edge right now and I'm not sure life is worth living for anymore. I have a 2 year old daughter and I am married to great wife who works and pays the bills and takes care of me. She is the only one I think believes me anymore. I saw on this website about LLMD's. I posted a topic on this site and got a few responses for LLMD's. Thank you by the way. I found one in West Chester, PA who is a memeber of the board of the Lyme Disease foundation. He charges 50-350 dollars a visit and doesn't take my insurance according to the receptionist. My appointment is July 20th.
My question is am I going down the right path? Does it sound like I've been suffering from Lyme Disease? since 1995? Why are LLMD recommended over Infectious Disease Specialist? Should I have been receiving antibiotics? Am i making the right move in seeing a LLMD instead of a Infectious Disease Specialist? (I am seeing both btw) Please someone out there who has been through something like this get back to me! i just want to play with my child, go places with my wife and enjoy life once more like I used to.
posted
1. 100mg of Doxy will not "cure" anyone of Lyme. (see Dr. Burrascanno's guidelines/treatment in the "newbie" section) -you were initially undertreated- 2. You were not adequately tested for Lyme, you should have been tested for the full spectrum of bands. Sounds like you got the CDC brand which eleminates the most Lyme indicative bands. 3. You may also have a co-infection. Ticks are dirty, they often will infect not only Lyme, but other things as well. Did your PCP or ID doc. ever test for co-infections? Bet not. 4. See a LLMD who is ILADS trained and follows their treatment guidelines. Don't bother with the ID doctor. The charge is the norm. It depends on how much time you need - the first visit may be the most expensive because you will have unanswered questions. They don't accept insurance, because insurance does not cover Lyme beyound the initial one month treatment. Your ID doctor is calling "IT" something else, like fibro. To find out why the ID doctors are not adequately treating Lyme, buy any book on Lyme disease not written by the Steere group (IDS). Cure Unknown and Beating Lyme are good ones. 5. Read up on Lyme, you probably have it. Get educated so you can make wise decisions. You are what ---29 years old? You have your whole life ahead of you. You owe it to your little girl and wife to do everything possible to get better again. You know you are sick, stick up for yourself and go out there and get well!!!
Beast Wishes -peedie
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
posted
So once you have had lyme disease you have it for life? And you need long life treament?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
quote:Originally posted by aubsdaddy: So once you have had lyme disease you have it for life? And you need long life treament?
Not necessarily; however, the longer the infection goes untreated, the more problems one will have. There are people who have had lyme, been treated adequately, and recover with few or no relapses.
Individual immune system response, overall health levels, and treatment regimens all affect how well one recovers from lyme.
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
| IP: Logged |
posted
well i tested three times for lyme disease. Was treated in 1995 for like 2 weeks with antibiotic. Was told by infectious disease in 2007 i was only positive because i had it before. got tested recently and my dr. says acute lyme and see ID. i guess i was orignially untreated correctly? got bitten again? all my life i have felt an empty space
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
quote:Originally posted by aubsdaddy: My question is am I going down the right path? Does it sound like I've been suffering from Lyme Disease? since 1995? Why are LLMD recommended over Infectious Disease Specialist? Should I have been receiving antibiotics? Am i making the right move in seeing a LLMD instead of a Infectious Disease Specialist? (I am seeing both btw) Please someone out there who has been through something like this get back to me! i just want to play with my child, go places with my wife and enjoy life once more like I used to.
Thank you all in advance!
1. I think you are going down the right path by seeking multiple opinions (LLMD and ID). Many ID's believe that lyme disease cannot survive a typical round of antibiotics, however, there is good (i.e., scientific) evidence that this may not be the case. However, nearly anyone can call him/herself a "Lyme Literate" Doctor, and while many are excellent, there are also some who recommend inappropriate/ineffective treatments or who are simply taking advantage of desperately sick people. However, if the one you are scheduled to see sits on the board of a lyme disease foundation then I think it bodes well. The only ways to know are to solicit opinions from other patients and to visit the doctor yourself and evaluate his/her knowledge and skill.
2. Lyme is a clinical diagnosis supported by lab testing, and really one only your physician can make; however, there is nothing in your symptom list inconsistent with lyme and/or other tick borne infections. Many people have been infected with untreated/undertreated lyme for 10+ years.
3. LLMD's versus ID's have different opinions regarding the commonness of lyme disease, the ease of treatment, and the length of treatment. This is why many here suggest working with LLMD's -- they have been dismissed in the past by ID's or other physicians taking a very conservative view of lyme disease.
In spite of 20 months of visits to one doctor and another, I was not diagnosed with lyme until a physician specializing in chronic fatigue syndrome tested me for everything under the sun which could present similarly. Lo and behold, the lyme which he almost did not test for came back very, very positive. I have improved greatly under the care of an LLMD, although my treatment will not finish until the end of the year (anticipating about 9 months total of antibiotic treatment).
You are wise to seek out multiple opinions, even the ID (not all will agree with me). When you see the LLMD, bring as detailed a history as you can with you. Ask lots of questions and do not be afraid to ask why he/she recommends a particular treatment regimen. Be aware that if you do have lyme and start antibiotics, things might get worse for you before they get better -- the die off of bacteria can cause a strong immune reaction which can lead to a worsening of lyme symptoms in the short term (called a herxheimer reaction, or herx).
You are very fortunate to have a loving wife and family to help support you. Good luck.
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
| IP: Logged |
posted
Should i say F the ID and go to the LLMD? He is prolly gonna tell me the same thing that i tested positive and thats cause i had it when i was a kid and it will always show up. is this true?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
There are lyme literate doctors listed on www.ratemds.com and there you can see what people had to say about them, but only a few are listed. I see you're in Pennsylvania and there is one doctor that claims he's an llmd in Hermitage but he's basically an idiot and doesn't follow ILADS guidelines or science in general, so please avoid him since you've been through enough already (I've never heard of a patient of his getting better).
The general rule with patients with lyme is that no doctor will do a single thing to help us, most lie and deceive us and misdirect us, except for lyme literate doctors. So try to see one, even though you'll need to travel most likely, but it's the only way.
Also there's a documentary out called "Under Our Skin" that would be for you to watch.
Posts: 499 | From Indiana | Registered: Oct 2007
| IP: Logged |
posted
The most famous chronic Lyme patient, Pamela Weintraub in her book - Cure Unknown - see page 290 "How I cured my own Lyme Disease". With the help of the greatest authority on Lyme Disease Dr. Burrascano, and with a complicated case of her own - she worked out a "pulsing" treatment on the final leg of her treatment which cured her. Read about Brooke Landau. She was recently cleared of the disease. However after years of misdiagnosis she once found herself in bed - unable to walk, losing her eyesight and hearing. http://www.sandiego6.com/news/local/story/Brooke-Landaus-Fight-Against-Lyme-Disease
Lyme effects everyone differently.
At this point no one here can tell you how long you will be in treatment. Initially, you did not get adequate treatment based on what you said. However, you did get the current standard CDC criteria for Lyme treatment. Your ID doctor is simply telling you what the IDSA wants him to say. See the LLMD and follow his direction. Good Luck. -p
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
bettyg
Unregistered
posted
daddy,
please break up your entire post into MANY, SHORT paragraphs and DOUBLE SPACE between each one of them ok so we neuro lyme folks are able to read/comprehend and then assist you ok
use my guidelines below ....
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
posted
I wish i knew if i had Lyme Disease. This is frustrating. I had it in 1995 and was on antibiotics for 2 weeks. always felt fatigued and tired since in 2007 was tested postiive igm. ID told me that it will always show up in my blood and i don't have Lyme Disease. In 2009 i got tested again because my anxiety worsened, pain in joints, muscles, night sweats and almost all the sypstoms I have. I was tested positive for acute lyme. I see a LLMD on the 20th and ID on the 21st. Do you think I have Lyme. I'm tired of playing this game. If I didn't have Lyme it wouldn't show up would it?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
posted
I was also thinking about repeaditly going to the ER at local hospitals until they get sick and tired of me. I'm in so much pain and no one wants to help my disease. The US healthcare system is by far the worse and I am actually thinking of moving to Canada and gaining citizenship in order to be properly treated for Lyme. Isn't that sad?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
posted
People in Canada come to America to get Lyme treatment. Here we have LLMDs and ILADs protocol. The LLMD you are going to see on the 20th - what is his regular practice?
You only have a week more to go - like kimwg said - if you can take with you a detailed history and any test result copies - this will help get you started in treatment.
As far as testing - the LLMD can explain past and present results for you. Yes you will show positive bands if you had it before.
Active infection is still active active infection whether contracted last month or years ago - it needs to be addressed. I don't really inderstand your concern there.
Please look at the "newbie" thread - especially Dr. Burrascanno's guidelines. It will help answer your questions and prepare you for your first visit to the LLMD.
-p
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
posted
my concern is it possible that in 1995 i was never properly treated and had lyme's disease this whole time. i was only on antibiotics for two weeks... i think lke 7 pills. my other concern is the ID i saw in 2007... why did he say that my results showed up because i had lyme disease before and I no longer have it?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
quote:Originally posted by aubsdaddy: [QB] I wish i knew if i had Lyme Disease. This is frustrating. I had it in 1995 and was on antibiotics for 2 weeks. always felt fatigued and tired since in 2007 was tested postiive igm.
Again.. go by your symptoms to tell whether or not you're still ILL!!
If you were only treated for 2 weeks then you most likely STILL have it. You were way undertreated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'd see both. LLMDs are best for Lyme/cos. ID docs can rule out other stuff. Some LLMDs seem to have blinders on and all they can see is Lyme in all patients. Since Bb mimics supposedly 300 diseases and has 50+ symptoms, everything under the sun can be blamed on this organism.
That's why other opinions can be useful, The best is a LLMD that was/is an ID doc IMO. Hire someone with the most knowledge is the bottom line. Good luck with treatment.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
the others have great advice.
start fresh, make a list of your symptoms and past history. lyme treatment is based on symptoms, NOT test results.
see a lyme literate doctor as soon as possible!!
you will probably be tested with a lab called IGENEX, which specializes in tick borne diseases.
you could even have coinfections which are bacteria that travel with lyme.
educate yourself and get the right treatment. these guidelines were written by the top lyme doc in the USA. print and save for future reference.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You wrote: my concern is it possible that in 1995 i was never properly treated and had lyme's disease this whole time.
YES! It happened to me and it happens to a lot of people. Borrelia (the bacteria that causes lyme disease) can go into cystic form when threatened by antibiotics or your immune system and live in the tissues in a dormant state for a very long time.
You wrote: i was only on antibiotics for two weeks... i think lke 7 pills.
Typical IDSA treatment which is inadequate in most cases.
You wrote: my other concern is the ID i saw in 2007... why did he say that my results showed up because i had lyme disease before and I no longer have it?
Antibodies will likely always be present once you've had lyme disease. That does not mean that you don't have an active infection.
He said you no longer have it because there is a huge political battle going on with lyme disease in the medical community.
Please excuse me if there is info in this that you have already seen but I've pasted from another post that I just made to someone else:
There are battles going on regarding the treatment of lyme disease. Many who end up at lymenet with chronic lyme disease are the result of the IDSA treatment guidelines.
The Attorney General of Conneticut found that the IDSA guideline authors had conflicts of interest and thus the IDSA has convened a new panel to review the guidelines. Hopefully they will make adequate changes but I'm not holding my breath.
Many with chronic lyme get what we call co-infections from the tick that passes lyme. Some of these infections require an entirely different treatment than lyme disease. It is not unusual to have a co-infection and if you do, it is much more difficult to get rid of lyme.
Your best course of action in my non professional opinion is to seek out an ILADS LLMD. Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best.
ILADS is a group of physicians who specialize in treating chronic lyme disease. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors) http://www.ilads.org/
You can go here and register and get a list of ILADS doctors that are closest to you. http://tinyurl.com/6na364
A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few others personal stories. Check your library and if they don't have it, ask them to get it for you.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Imagine if you had gotten tuberculosis and only been treated two weeks. This is the same thing. You had lyme the entire time. It mutliplies at about the same rate as TB so it takes a long time to get rid of too. It used to take years to treat TB before some serious research was done, and we still haven't done the research into drugs specifically designed for lyme yet.
Things will get better once you see an llmd though, not necessarily symptoms getting better right away but you'll start to see hope and realize some people actually do have an education and are willing to help.
Posts: 499 | From Indiana | Registered: Oct 2007
| IP: Logged |
posted
Thought I should update you all on my condition. Well its not much of a success update but sure helped. Around 2:30pm when I finally woke up drenched in sweat I could hardly move except some limping and I was in excruciating pain all throughout my body.
I went to the hospital immediately. The did an MRI an found a cyst on my brain that was very tiny but the doctor said not to worry about it, that a lot of people have it and it would never effect me.
He conducted a spinal tap to check for menegitis and a Chest Xray. Both turned up negative.
They then gave me 2cc dilauded interveniously. Wow... talk about euphoria. I haven't felt that way in 15 years. I felt no pain anywhere and was able to move. He sent me home with then 2mg diluaded pills and that was that.
I am supposed to see my family doctor tomorrow morning, maybe he can give me something less strong. I just couldn't wait another day I had to go to the hospital.
I have one question that has been bugging me to death. I have this problem where I cannot comprehend what my wife is saying something or my mother or father and I have a hard time listening and it results in me repeating the same question over and over again driving them mad. Could this be any affect of the lyme disease or am I just crazy?
Posts: 52 | From Levittown, PA | Registered: Jul 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
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. 
Printer-friendly view of this topic