I've only been sick for 1.5 months (tick and rash 2.5 months ago) and I'm already frustrated. You people that have been through so much are amazing!
I wrote here a few days ago and got a list of doctors. I called today and there are waits of at least 3 months with anyone that has good feedback and only slightly less for those without much feedback at all.
I made an appointment (Dec 8th)and got on the cancellation list in hopes of getting moved up.
I am going to my GP again tomorrow in hopes of getting tested through Igenex (not holding my breath though based on past experience).
I'd also like her to resume treatment but she thinks low doses of antibiotics are sufficient so even if I do convince her, it won't help much.
Any advice as to what to do to get through the next couple of months? I was on antibiotics for 28 days and they did relieve some symptoms.
My main symptom is joint pain which was reduced slightly with the antibiotics and has begun to get worse now without antibiotics- quite painful now (intermittently). Fatigue is creeping in too.
If I cannot get to a LLMD for months, what options are there?
Thanks!
Posted by Lymetoo (Member # 743) on :
You could try natural stuff, though it won't cure you.
Try Samento for one.
Posted by TF (Member # 14183) on :
Usually, we go to any old doctor who will treat for lyme disease while we wait for the doctor we really want to see. I had to do this.
This is called moving up the food chain.
Some lyme support groups can usually tell you the names of docs like this, with wait times of 2 weeks or so.
Also, if your regular doc won't give you any more antibiotics, you can try walk-in clinics. If you tell them you had a tick and a rash and now you are sick, you may be able to get 28 days of meds out of each one you try.
Posted by SeekingAdvice (Member # 22337) on :
Thanks. I'll try these out!
Posted by Pinelady (Member # 18524) on :
Good Job TF. Seeking if you order a test kit from
Igenex, it is hard for them to refuse the draw,
since you are paying for it. The most important
part is getting the results. Many are told by docs
they are neg. when in fact they have bands that
indicate borrelia and they do not know how to
read it. Much less treat it.
Posted by bettyg (Member # 6147) on :
seeking advise,
in case i didn't sent you this, read the bottom about the 7 types of medical STAFF who can sign IGENEX'S LAB REQUEST to order western blot igm and igg or co-infection tests ....
also print off dr. burrascano's lyme guidelines ...
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
If your symptoms returned after the 28 days, perhaps you can convince your Primary Dr to order tests for the co-infections & give you ABX to hold you until your Tick-borne Disease Specialist appointment.
Bring a copy of the ILADS guidelines & state that you'd prefer to be treated according to them since the IDSA guidelines are going through a reassessment due to conflicts of interest, for 12 of the 14 authors, being found by the CT attorney general.
Let the doctor know that you have an appointment scheduled so they know they will be off the hook for further treatment.
If the Primary will only give you 200mg/day of Doxycycline, that's a bacteriostatic dose & should at least help keep it from progressing. It's better than nothing.
Posted by coltman (Member # 21272) on :
I personally gave up on LLMD , I have one appointment far away which I will use as 2nd opinion.
But if your PCP is good you can do tests, lots of things can be wrong and it will be in your interest to find out if they are and start addressing them while you wait for LLMD apt
p.s. Ohh and btw 3 months is not bad, I know one which has 6 months wait for new patients!
Posted by BC (Member # 20675) on :
Go back to your PCP and beg for more drugs. Pull out all the stops. My wife and I did a similar thing to tide her over until she got to the LLMD. In the IDSA guidelines is says that a second course of abx is ok if there is persistant joint swelling after the first treatment. So your PCP should be fine giving you more drugs if you still have joint swelling.
Posted by SeekingAdvice (Member # 22337) on :
I went to my GP today and it was awful. She is sending me to a rheumatologist and only gave me enough doxy (200 mgs per day) for 14 days.
I guess I can try the walk-in clinic when these run low.
She doesn't think it can be lyme or a co-infection because the tests have been negative.
BTW- my joints are very achy and intermittently very painful, but they are not swelling. Anyone have similar experience?
Maybe it something else, but if it is, my current doctor doesn't have a clue what it could be.
Posted by SeekingAdvice (Member # 22337) on :
She also tried to give me Cymbalta so clearly she thinks it's depression or fibromyalgia.
Posted by Abxnomore (Member # 18936) on :
Take the above advice and talk you your local support group and TF's advice.
See who every you can until you can get into the LLMD of your choice.
Posted by Keebler (Member # 12673) on :
-
You said: "She also tried to give me Cymbalta so clearly she thinks it's depression or fibromyalgia."
Run . . . run . . . run . . . from this doctor. You need a LLMD.
Rarely - very, very rarely, will any rheumatologist understand lyme. They make their money with life-time antidepressant and lyrica prescriptions rather than exploring any possible underlying infections.
While some drugs can help with symptoms, what your doctor mentioned will do nothing to help if this is an infection. Some other drugs used to placate patients are bad for your liver or kidneys and will greatly impede recovery if you have lyme. Even tylenol is very hard on the liver. You need your liver to help you get well. Ibuprofen is hard on the kidneys, so be careful with that, too.
If there is a 3 month wait for your LLMD, there are things you can do in the meantime to help yourself.
In the meantime, read Singleton's book, Buhner's, Zhang's . . . . I lost my links folder but you can cross search the names with "lyme" at Amazon. Or see the Lymebrary link above, etc.
Ask the LLMD to be put on a list if they have a cancellation - ask what books or measures the LLMD may recommend for you while you wait.
Do not settle for inferior doctors.
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[ 09-15-2009, 01:59 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
-
I found one links page. Please pardon that there are some repeats to some posts above. My eyes just can sort all that out right now.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
. . .
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Coinfections should also be evaluated. 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:
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lyme Disease Association - a wealth of information. Pictures of various rashes - and DVDs of past ILADS seminars - can be found in the menu at the left side of the home page.
=====================
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
DVD is $40. and worth every penny. It explains a lot. (It may not be for sale as the film is being shown in theatre around the country now. Perhaps you can borrow one from your local support group.)
==============================
In addition to the usual coinfections from ticks, there are some other chronic stealth infections that most excellent LLMD know about:
Thanks to all of you!! I called several more LLMD today and found one with good recommendations that had a cancellation for later this week.
I am looking forward to discussing my symptoms with someone who is informed and, hopefully, cares.
Posted by Keebler (Member # 12673) on :
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Great. The good news is that since your bite/rash were just 2.5 months ago, you have an excellent chance if you get a very good doctor to evaluate and guide you. It will still take some study and great self-care but you have a good chance.
If you have photos of the rash after the tick bite, take the photos with you. There are some great suggestions in this thread:
You might want to copy info where doctors state it is very possible that a test conducted within the first 3 weeks of infection will be negative.
Posted by Lymetoo (Member # 743) on :
Negative tests through Quest or Lapcorp labs is very common. Do not be deterred.
You want to get well!!!
Posted by TF (Member # 14183) on :
Fabulous that you will see a lyme doc this week!
Also, I just wanted you to know that lyme disease causes fibromyalgia. (Depression can also cause mild fibro.) In fact, my lyme doc taught me this. He had a fibro diagnosis for years and he treated many fibro patients.
Then, he decided to test them all for lyme disease. Guess what? 100% of them had lyme disease. He tested himself, and he had lyme disease too. He treated himself and them and they all got rid of their fibro.
In fibro support groups, they say there are 2 groups of people--those with mild fibro that never gets worse, and those whose fibro becomes worse and worse over time. The first group are depressed and will get rid of their fibro when they are properly medicated for depression.
The second group has lyme disease.
Also, a Boston TV station did a great show on lyme disease a number of months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease
Posted by SeekingAdvice (Member # 22337) on :
Thank you all for the information and advice! It is a shame that it is so hard to find a doctor that does a good job at treating lyme disease.
I live in an endemic area- you'd think they would all know what they were doing since so many people get it.
I am not surprised about the connection between fibromyalgia and lyme but I wasn't aware of it.
I do know that my doctor hasn't done nearly enough to be jumping to fibromyalgia yet though.
Thanks again! Hopefully the LLMD will work out!
Posted by Pinelady (Member # 18524) on :
Glad you caught it before it progressed to a diagnosis of MS instead.