posted
Flu like symptoms end of June Severe neck pain end of July along with Bell's Palsy
High Positive Lymes test
21 day cycle of doxy
Im currently on the doxy and feeling good. Im scared that when I go off the symptoms will return. Apparently the neuro I see now says I have Stage 2 Lymes due to the Bells Palsy.
Is it possible the doxy is enough? Anyone have a similar experience?
Posts: 11 | From nj | Registered: Aug 2009
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bettyg
Unregistered
posted
bottola,
in my NON-MEDICAL opinion, NO; 21 days of doxy is NOT enough.
to me you are in the late stage; CHRONIC since you weren't given abx promptly.
have you read these links in my welcome letter?
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!
since doxy is really harsh on the gut, i highly recommend (and your doctor should too) that you take high culture/high strain REFRIGERATED probiotics. You can get them in your local health food store.
A few brands are : Megaflora by Megafoods, NSI 15-35, or Renew Life Ultimate FLora CRITICAL CARE. The more strains the better!
Doxy kills all of our good bacteria and it needs to be replaced with good quality probiotics otherwise you may end up with serious gastrointestinal distress.
It is usually recommended to take the probiotics at bedtime and at least 2 hours AWAY from antibiotics or supplements.
Replenish 2-3 times a day.
good luck and keep us posted. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
I am newly diagnosed as well and my gp gave me an initial 21 day course of doxy too. I was fortunate to get an LLMD appt in early Sept and my gp gave me another 21 days so I will only have a week off meds until I see the LLMD.
My symptoms on this second dose have gotten much worse and others have sprung up that are new. I know it will take an LLMD to treat me effectively and almost certain that it will require longer than a month and a half of abx.
I've been spending alot of my free time educating myself about this awful disease - I strongly encourage you to as well. The links on this site are very educational and use the search as well.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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posted
Also meant to say that just because your MRI came back clear it does not mean that you don't have neuro lyme. Mine came back clear too and I most certainly have neuro issues.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When you go off the doxy, the symptoms will return because 21 days is not enough to kill this even if you started the doxy within a week of the bite, which you did NOT.
Hundreds of people have gone down this path. That's why this site exists. The 21 days of treatment leave people with lyme disease. Then, they have to figure out it is lyme and find this site to find a doc who knows how to get rid of the lyme for them.
Sad but true that the medical profession has been told by the Infectious Disease Society of America that it is easy to get rid of lyme disease. They believe them and so they treat everyone just like they are treating you.
Usually, a good doc will give you more meds if you report that you still have symptoms. So, tell him you still have symptoms at the end of the 21 days. That keeps you on meds, hopefully, until you can find a doc who knows how to treat lyme disease. Go to walk-in clinics or other doctors if you have to in order to stay on the doxy until you can get with a lyme doc who will take care of this problem for you.
Stay out of the sun while taking doxy or you could get a nasty medication burn. You will not see your skin getting red. It will just hit you.
I had undiagnosed lyme disease for 10 years. A good lyme doc got rid of it for me 4 years ago. Then, Aug. of 2008, I got bit again and got a bulls eye. My lyme doc treated me for it immediately, and I had NO SYMPTOMS, so it only took me 30 days of meds. But, I took 2 different antibiotics and at higher doses than you. That's the proper way to treat a recent bite.
So, I have been treated twice for lyme and I know what good lyme treatment looks like. It looks like what the Burrascano Guidelines say. You were given the link already.
This is the most important document for you to study so that you learn about the disease you now have and what good lyme treatment looks like.
Knowing this document will enable you to make good decisions and get you a successful result.
We will help you all we can. Just ask questions.
Posts: 9931 | From Maryland | Registered: Dec 2007
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The only way to tell if it's neuro is by symptoms and maybe with a SPECT scan. Sometimes it will light up the SPECT in a particular way.
I think your neuro is out of his realm (I was going to say something else but I'm trying to be polite ).
You may not have neuro lyme, but the MRI doesn't prove anything.
I have a friend who was diagnosed for 12 years with bi-polar. But she had seizures, and verbal ticks, and so many other strange symptoms that she went to many neuros.
EVERY ONE, missed the lyme. EVERY ONE!! Including the big time specialist down in DC who I even mentioned lyme to.
There was no reason to think she was ever bi-polar. She has lyme and bartonella and that can mess up one's brain.
Please follow the advice of these other posters above.
BTW, I went on abx last year and thought it would be done in a few months. It's been 14 months and counting. It's a tough disease to get rid of.
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
My son had an MRI about 5 weeks ago and it was clear. So I really don't think a clear MRI means much.
We spent a significant amount of time with a neurologist who was barking up all the wrong trees.
Regardless, at the end of it all he ended up being diagnosed and confirmed as a neurological Lyme case, for sure, signed & sealed by the ID doc and handed to the state health dept.
Posts: 43 | From Southeastern US | Registered: Jul 2009
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posted
I only addressed the neuro issue in my above post. I want to say something about the prescription, too.
My son was at first given a prescription for 2 weeks of doxy.
As soon as I got the prescription I scoffed because I really didn't think that it was enough. I'm a mom.
I called the general practitioner who turned me away and said basically not to bother the docs over the holiday weekend. So after three days of this nonsense I approached the neurologist and requested IV abx.
He called the ID doc and they agreed to hospitalize him and set him up with a month of IV 2 g Rocephin.
When that was over I begged for more, but was cut off, no surprise.
So I gave my son the old Doxy prescription, waiting for our appointment with a LLMD later that week (three days ago).
I wasn't sure if I would be able to get in to see this LLMD, but I was convinced of the need.
A very good friend in MD managed to get prescribed 30 days of Doxy and gave it to me to hold us over just in case.
Luckily, we were able to get in.
The LLMD says we're in for the long haul of 2 - 3 years of treatment. Heavy treatment at first then hopefully tapering off in time.
My son was originally bitten by the first tick around May 8, 09. Likely bitten again in June. The LLMD is treating him as chronic neuro.
21 days is not enough. Bell's Palsy as I understand it is a symptom of neurological Lyme and you have to treat neuro Lyme very seriously.
My son didn't have BP but he might have been treated earlier if he had because BP is much more documented with neuro lyme than diplopia, which is what my son has.
Posts: 43 | From Southeastern US | Registered: Jul 2009
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posted
Im having a spinal tap tomorrow. that should show if its still there....
Posts: 11 | From nj | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Wrong!!!!
Read what Burrascano says about a spinal tap's ability to find lyme disease:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!" (p. 8)
You have GOT to educate yourself about this disease! Lyme does not hang out in the spinal fluid hardly ever. That is what Burrascano is saying. You have to read the Burrascano document. You know nothing about lyme disease. This document gives you the education you need to make good health care decisions.
I started out seeing a neurologist too. He ordered a spinal tap for me too. It didn't show lyme disease. The neuro will then tell you that you do NOT have lyme disease and will treat you like a nut.
Many on here will tell you the same thing. Do you realize the dangers of having this spinal tap? Many people have an unbelievable headache for weeks afterwards. Do a search on LymeNet and read the previous posts about this.
You can also end up with spinal fluid leaking out due to the puncture site not closing up. Then, you have to go back to the hospital and have a "blood patch" done. All this for what?
The neuros hate to say anybody has lyme disease. So, this is what they do. Sorry to say it, but neuros are our enemy. Many have gone this path before you. They all say it on this site. We have all had such bad experiences with them. They are as bad as infectious disease specialists. They do not know much about lyme disease! You'll see how you get treated after your negative spinal tap.
Read this in Burrascano, top of p. 7:
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms."
A person is diagnosed with lyme disease based on their symptoms and history. No test can prove a person does NOT have lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
TF is SO right.
a spinal tap is way dangerous and not reliable.
i would not recommend it!! it is not an effective method of determining lyme and co's
are you seeing an LLMD or a doctor that follows ILADS guidelines?
lyme is treated based on symptoms not test results! find a good lyme literate doctor if you want to recover.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree with the experts. Spinal tap is unreliable
unless you want to send a sample to Igenex. And
neg. scan for lesions does not mean it is not
Neuroborreliosis. You can be crippled and unable to
walk and not have lesions, yet. And it is rarely
found in CSF by a normal lab.
-------------------- 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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posted
Why are you having a spinal tap, exactly? Didn't they already diagnose you with Lyme and you tested positive?
We went with the spinal tap. It went fine. But my son didn't have Bell's Palsy like you. Like I said, neuro Lyme is serious... but you have to take a LP seriously, too, especially if it will likely get you nowhere at the end of the day.
My son had severe diplopia (crossed-eyes, markedly rare with Lyme, thus their suspicion of the positive test).
As it turned out, his diplopia was partially caused by the immeasurably high intra-cranial pressure he was experiencing.
He also had severe headaches and whooshing in his head. And he could hardly stay awake or sit up. Extreme to the max lethargy.
Thus the CNS Lyme concern.
I went with the LP because I absolutely knew they would get what they were after and I wanted them to give us some peace about finally administering a start to proper treatment.
And I was scared, of course. Scared out of my wits. I wanted to trust them.
But I was the one who suggested the LP to my son's neuro and he enthusiastically went with it. I hardly know why I wanted it at the time. It just seemed like the right thing to do.
I really can understand your concern.
I'm going to digress but I want to share this for a reason:
I went through a similar thing about 4 years ago when I was living in Asia and I decided had to diagnosis myself because all the doctors around me were numchucks.
(BTW - I WAS NOT dealing with Lyme, but with my own little deal - thoracic outlet syndrome plus etc. I'm doing much better. I can type again, yay.)
But I was so scared. I am so not a hypo-chondriac but really suspected LGD at one point because it was moving into my legs. I finally told a hospital that I was a doctor and ordered my own MRI's. It might sound nuts but I'm not.
I just believe in educating and advocating for yourself when you need to!
It turns out that the MRI's came back showing exactly what I had suspected (TOC). But the fact is the docs weren't able to handle it, even then. They gave me the most ridiculous therapies ever. And drugs that would rot my guts and head.
I learned then that doctors are human and that is the end of the story. (I moved back to the US where I thought they might better than human, haha).
My question: Why stick a hole in your spinal column for the numchuck?
Continuing about my son: we thought we were going in for more diagnostics but it turned out that the spinal tap's greatest benefit was that it was therapeutic and relieved some crazy pressure.
My son got a month of IV and the prescribing ID doc wiped his hands of us.
But the neuro still can't wait to do another one! He had very little to do with the actual prescribing but he liked to play with nerves bundles.
But h*ll if I'm putting my son through that again, even for therapy unless his life depended on it. Spinal taps are very risky.
He isn't having headaches now and we've been prescribed a diurretic (sp?) for plane travel (by the LLMD).
My question: Why do it if you already have a diagnosis? If you're just trying to prove that it's neuro Lyme by doing it, it isn't worth it because these guys will dump you on the street at the end of the day.
The likelihood of your LP showing anything that is going to make them pause is slim, like people above have said.
Read, study and find a LLMD. Be easy on yourself.
Posts: 43 | From Southeastern US | Registered: Jul 2009
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The spinal tap will just be painful and *POSSIBLY* confirm the lyme diagnosis. If it's negative, (which it's likely to be even with a major infection) it means nothing.
You understand? NOTHING!
Why are you asking for advice from we who have had all this experience if you're going to disregard it?
We have tried to help you. I guess you will have to learn from your own experience.
Have a nice tap.
Posts: 872 | From New York City | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Seriously I find some of your comments rude. I AM scared and IM trying to educate myself. I KNOW NOTHING about this disease and I AM Seeking out a LLMD.
I guess this isnt a support site if you are all going to "scream" at me "nice tap". Im scared enough and most LLMD cannot see me until the end of SEPT!
Posts: 11 | From nj | Registered: Aug 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sorry bottola. I do apologise. We all have our
Lyme issues. The anger is really not directed to
you. It is because of the CDC and the IDSA that
we have not got an accurate test and are sick so
long. And then many have not been treated
properly. I was scared to death of the wait to
see a LLMD. I had contacted 2 University
Hospitals and calls were not returned for 2
weeks. These people told me I was wasting my time
seeing a IDS as they would not treat for the
length needed to cure. I found that astonishing
but took the advise. Now I understand. My LLMD says It may take a
year of meds. I am on my 3rd. antibiotic.
-------------------- 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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