My Neuro wants to do an LP to test for Lyme. He thinks I may have a case or chronic neuro lyme. My ELISA and Western Blot continue to be negative.
I have heard that chances of actually finding the bacteria in the CSF are slim. I want to try and get him to put me on doxy w/o the LP.
Any ideas on how to go about this? I am seeing an LLMD in June. I figure why put myself through another painful test. I haven't received any treatment for lyme thus far and do not want to prolong treatment any further.
Any tips on how to get him to see the big pic...he is a sweet guy but I don't really think he ahs a clue about lyme disease.
JT
Posted by hurtingramma (Member # 7770) on :
JUST SAY NO! A LP is just a waste of time and a painful thing to go through. Just be truthful and tell him you don't believe it is necessary.
Posted by Vermont_Lymie (Member # 9780) on :
An LP is not necessary; best to see an llmd.
Many folks, myself included, had difficult after or side effects of an LP. The LP itself was not painful, I just couldn't walk or get up from a prone position for over 2 weeks afterwards, which was quite difficult.
There seem to be precious few lyme literate neurologists.
Do a search here under LP or spinal taps and you will see many stories!
Posted by Abxnomore (Member # 18936) on :
Agreed, it is an invasive procedure and unnecessary. Tell your doctor that lyme is based on a clinical diagnosis and tests are used to confirm that clinical diagnosis should they come back positive but a negative test does not mean you
do not have lyme if you have the symptoms and a history of possible exposure. A spinal tap won't necessarily produce a positive result even if you do have lyme.
If he insists, find a new doctor.
Posted by sutherngrl (Member # 16270) on :
Wouldn't do it. It is pointless when Lyme diagnosis should be based on clinical evidence.
No good LLMD would do a LP even if your other test were negative.
Posted by DaveNJ (Member # 17362) on :
Been there done that..waste of time and monye...tested negative 10 times inlcuding LP....clicnally diagnosed ...tested positive after 2 months of abx.
Please see a LLMD.
Dave
Posted by jtavares76 (Member # 19216) on :
Thnak you...thank you...thank you.
Everyone just confirmed for me what I already knew...totally unnecessary.
When I see him next week...my answer to the LP will be no way. If he thinks I have a case of chronic lyme then he should start me on antibiotics until I see the LLMD in June, correct?
If he refuses, I will just have to wait it out until June...however, my PCP did say she could refer me to an ID in the mean time and he could treat me based on symptoms.
Anyway, thanks for the wonderful advice. JT
Posted by Keebler (Member # 12673) on :
-
No. No. NO. NO.
Cancel that appointment with your neuro.
He is not up to date on the latest research (that has been out there for years) on both the LP and lyme testing.
Do NOT - Do NOT - go see an ID doctor. I will post an article below to explain why.
See a LLMD. See one who is ILADS-educated or an ILADS-member. So, even if you have to wait until June, it's a waste to see other doctors regarding lyme. See if you can be put on a list for if there are cancelations to fill.
I cannot tell you how important that is to the quality of the life you have ahead of you.
=================
Between now and June, there are MANY things you can do to help yourself.
Many LLMDs incorporate modalities from all three of the books below. They will at least be familiar with the authors.
After reading all of them, you might call your LLMD's office and ask to talk to the office manager regarding whatever measures call loudest to you from these books. Ask what you do can do in the meantime.
Ask about the time right before your appt. if any more testing is to be done - you might need to be off everything for a week or more then. Maybe not, though.
Best of luck:
=======================
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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.
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
This explains why a LP is such a poor test. Plus, they can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making money from a test that does not work to dx lyme.
AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . . -
[ 02-12-2010, 02:23 PM: Message edited by: Keebler ]
Posted by jtavares76 (Member # 19216) on :
Keebler...thanks for all the helpful links and suggestions.
I will wait until the appt. with the LLMD in June rather than attempt to educate the neuro about Ilads guidelines.
I've wait this long, what's another 90 days?
Thanks again, JT
Posted by bettyg (Member # 6147) on :
just DON'T DO THAT LUMBAR!!
Posted by poohbear74 (Member # 18766) on :
JT I have to ask what are your symptoms?
I have been there with the ID doc and its a waste....
I understand about the LP but what if there is a possibility that its not lyme.... I know that's bad saying that but......
I don't mean to sound neg, but i am contemplating the something as we speak .my test are in CA hopefully being dx ..
I am 50-50 about the test because they can show so many more thing and so little as well and i am highly prone to headaches as well. so we no the outcome i will have..
but i m so desperate for an answer that i will do anything...
Jt you are lucky to find the LLMD i cant get one haven't had any luck with the insurance BS.....
Although my RH doc said if IG lab comes back + she is going to put me on IV...
my thought to you is just make sure you are looking at it from views because you might find something else..
i am sure everyone points are good ... they have been through a lot..
best of luck to you..
Posted by Wimenin (Member # 15294) on :
NOOOO!! DONT DO THE LP...!!
Posted by Wimenin (Member # 15294) on :
NOOOO!! DONT DO THE LP...!!
Tell him you'll consider a LP, AFTER, you get put on 2 months of antibiotics. If he refuses, then forget the neuro, get yourself to a LLMD specialist, and start proper treatment.
If he does give you the antibiotics, still, DONT do the LP. Its not accurate for lyme testing, and the headache afterwards...oh my...7 days of non stop migraines and having to lie on your back... its not worth it!!
Posted by Kreynolds (Member # 15117) on :
I had it done twice.... If I knew then what I know now I would have said no. My test did come
back positive. To be quite frank with you it was the worst pain I have ever been through. Also you
Have to take into account that there is no guarantee that they will even get enough fluid.
I'm glad my tests are done... This was a year ago. But it did come back positive.
I think it is an unneccessary test. Good Luck if you go! Man does it hurt!
Posted by poohbear74 (Member # 18766) on :
so everyone that had the test do has come back with 7 days of 100% headaches????
was it done with x-ray? did any one have the blood patch? did everyone get fluid?
the procedure it self hurt or the headaches?
I just want to fill in all my blanks....
Posted by Kreynolds (Member # 15117) on :
I didn't have any headaches... 1 out of 2 tests were able to get fluid. The one they did get came
back positive. yes it was done with x-ray. I didn't have the blood patch.
The procedure itself hurt like hell. They are sticking a huge needle near your spine!
Hope that helped....
Posted by poohbear74 (Member # 18766) on :
thanks kreynolds
mine is scheduled for April 13. i am still in the air about it to.
I am waiting for the labs from CA I don't know how long they take .. Anyone know the answer to that one?
I am in so much pain and so desperate for an answer i a willing.I will say i am second guessing it i am just not sure...
You never know if you are making the right move. my docs wont give me the doxy but they have given me 3 round of levquin because i have a staff infection??? for the 3rd time in 3 months...
not much diff huh its an anti right.... The docs don't make much sense....
I am sure the needle hurts when i had my kid they had a hard time giving them to me. and the way my luck goes i will have no fluid and a headache a - results...haha...
thanks for answering...
why did you have it done 2x?
Posted by DaveNJ (Member # 17362) on :
Poohbear,
The procedure was painless and quick...the headache started 36 hours after the procedure and lasted 4 days...it was brutal....
Dave
Posted by pab (Member # 904) on :
quote:Originally posted by poohbear74: so everyone that had the test do has come back with 7 days of 100% headaches????
was it done with x-ray? did any one have the blood patch? did everyone get fluid?
the procedure it self hurt or the headaches?
I just want to fill in all my blanks....
poohbear,
My sons have had several LPs. Their neurosurgeon does the procedure. They have high intracranial pressure, so it isn't a problem getting enough fluid. My son had 50 ml of fluid drained during one of his LPs.
My kids are sedated for the LPs. You can have a low pressure headache for a week or so after the procedure. If the pain is unbearable, you can get a blood patch.
LPs gave my sons relief from the severe, 24/7 headaches. My sons opening pressures (during the LP) were very high.
Caffeine helps the low pressure headaches. My sons neurosurgeon always had them lay flat for at least 4 hours after the procedure. They were in the same day surgery area. He offered pain meds but they wanted to stay with Tramadol.
When you get home, you should lay flat for 24 hours. The low pressure headache usually starts around 36 hours like the previous poster said. If a low pressure headache starts, you need to lay flat for the next 24 hours.
I wouldn't get an LP for diagnosis of Lyme.
Good luck with your decision.
Posted by poohbear74 (Member # 18766) on :
PEGGY so your sons had high pressure? and that was found out with the lp was it causing the head pain?
what was the opening pressure? they couldn't tell that on the MRI?
and by doing that you found out what they needed see that's what I am afraid of i don't do it i might miss something but i am scared as hell!
I think if i do it i will stay in bed for a week with an caffeine drip!HAHA
Why does it take 36 hrs for a head ache to come on any one know that?
Posted by Keebler (Member # 12673) on :
-
If a neurologist is not even knowledgeable (and possessing "false" knowledge) about lyme are you going to trust him to know everything about what else this might be?
I sure would not. I'd want someone far more educated and alert.
-
Posted by jtavares76 (Member # 19216) on :
Pooh Bear,
In response to your questions about my symptoms. I have a whole gammet of them.
I've experienced numbness and tingling in the face and extremities, headaches, nausea, IBS-like problems, difficulty concentrating, extreme anxiety, muscle twitching, muscle and joint pain that migrates from place to place,dry eyes, chest pain and the list could go on.
At the start of these symptoms, the neuro put me on steriods (big mistake...I know that now) and I have been in steady decline ever since.
Over the past 3 months, I have been though test after test - Lupus, MS, mono, HIV, hepatitis, coagulation disorders, etc.
I have seen my PCP, 3 ER docs, neurologist, hematologist, pulmonologist, rheumatologist, etc. Most tests have come back within normal limits w/ the exception of some herniated discs in my lumbar (and the neurosurgeon said this was normal for someone age 32).
At least my PCP and neurologist are in agreement that it is probably a case of chronic lyme (b/c of a documented "bug" bite 2 summers ago that they treated me for with steroids and antihistamines)...however, my lyme test continues to come back negative (but we also know how inaccurate these tests are)
I think my neuro (who has treated me for the severe anxiety and I am thankful for that)just wants to use me as a guinea pig. The more I read about chronic lyme, the more I realize I know more than him about the disease.
So I am off to see an LLMD (who is also an infectious disease specialist) in June with the support from my PCP - who was pretty up front that she has no idea how to treat chronic lyme appropriately.
In the meantime, I am having a full cardiac work up to r/o anything heart related w/ the chest pain...I have been through too many tests and the LP is just another inaccurate way that docs think they can test for lyme.
However, Poohbear, if you need them to rule out other disorders, the choice is yours. What are your symptoms? Are they thinking you have something other than lyme and Co?
JT
Posted by poohbear74 (Member # 18766) on :
WOW JT We could mirror each other! I am on steroids and since then i have been going down hill but it has been the only thing that makes the head pain go away! And that pain is BAD!!!!!!
If i don't take them i CANNOT function the head pain is like being shoot. it is starting as we speak i need my afternoon med..
looks like we have had the same work up... and docs.. with all the same answers .. i am waiting on the test results like i said from CA in hope to shine some lite.
i have had all the test from the Id doc's to thr Rh doc's to neuro. they just dont know...
I have this terrible bitter taste in my mouth that's getting worst.in the past week bitter knees were so bad i could walk and not to mention i have broncottis (sp?) and staff infection from a surgery that i did not need in DEC to see if that would help the head pain...
and all that's ten fold since i have been on steroids for the past month 1-2 but if you take that med away from me. its UGLY I think i will commit suicide !
yes thats bad but i can't live with the pain..UGH!!
anyhow i find it very interesting that we have similar cases and are going through the same dilemmas... hope fully we can help each other through...
I have a feeling i will be the one lagging behind you have the LLMD appointment . and i will be crying i did the lp....
what problems did you get from steroid s and why were you on them?
oh they have pretty much ruled out everything for me they are at just at the last test.i guess to say they did everything.
so for any typos i am rushing i need to get the kiddies... talk to you soon...
April
Posted by Keebler (Member # 12673) on :
-
PoohBear,
I'm so sorry that this news has not reached you yet. So you must not have a LLMD. I hope you can find one soon.
Steroids are to be avoided for all lyme patients, except in life-threatening emergencies and then, with special attention to particular abx.
However, it can be very dangerous to just stop steroids. They would need to be slowly tapered off.
I hope you can find proper medical guidance from an LLMD in how to do that. With the right treatment for the underlying infections, pain can be greatly reduced and many LLMDs can also offer some pain management along the way.
(Assuming you have lyme or other tick-borne infections or you'd not be at this site) . . . The infections are what causes the pain. Treat the infection and the pain will be reduced. It has worked for many.
It is important when you do find a LLMD that you tell them of the steroids (dates, duration, type, dose) as that will alter your treatment protocol so that it will better work for you.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
My ELISA and Western Blot continue to be negative.
Sorry if I missed this somewhere. Which lab?
If not from Igenex, it means nothing.
Posted by Fordace (Member # 14874) on :
I went for the spinal tap, it was sooo painful I had to ABORT the procedure midway through. They never eached the spinal fluid area. Plus if you have anxiety issues from the lyme and co, this will exaggerate the symptoms 100 fold. Don't do it.....at least, for me, it was unbearable and I am a very tough guy with pain.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler: If a neurologist is not even knowledgeable (and possessing "false" knowledge) about lyme are you going to trust him to know everything about what else this might be?
I sure would not. I'd want someone far more educated and alert.
ditto to that!!!
Posted by jtavares76 (Member # 19216) on :
Lymetutu...yikes.
Thanks for forwarding the thread "spinal tap nightmare". It was very informative and confirms my decision not to have a LP done.
JT
Posted by adamm (Member # 11910) on :
useless
Posted by Kreynolds (Member # 15117) on :
quote:Originally posted by Fordace: I went for the spinal tap, it was sooo painful I had to ABORT the procedure midway through. They never eached the spinal fluid area. Plus if you have anxiety issues from the lyme and co, this will exaggerate the symptoms 100 fold. Don't do it.....at least, for me, it was unbearable and I am a very tough guy with pain.
Told you it was painfull, Fordace, I hear ya man my anxiety was through the roof!
The had the needle in my back and they had to elevate me! I was up in the air like superman!
Man it sucked... I WOULD NOT recommend it to anyone!
Posted by pab (Member # 904) on :
quote:Originally posted by poohbear74: PEGGY so your sons had high pressure? and that was found out with the lp was it causing the head pain?
what was the opening pressure? they couldn't tell that on the MRI?
and by doing that you found out what they needed see that's what I am afraid of i don't do it i might miss something but i am scared as hell!
I think if i do it i will stay in bed for a week with an caffeine drip!HAHA
Why does it take 36 hrs for a head ache to come on any one know that?
My sons were diagnosed with pseudo-tumor cerebri (high intracranial pressure) after their 1st LPs. Their highest opening pressure was 450. The normal is 80-180. It's the only way to get your opening pressure. My sons MRI's are normal.
Both of my kids had several LPs and had fluid drained because it's the only way to reduce their headaches/pressure.
My kids had a caffeine & fluid drip after the LP. They were treated with pain/nausea meds during the LP and used their own pain meds after the LP.
There are different types of needles that can be used for LPs.
We are lucky to have a neurosurgeon do their LPs. LPs aren't a lot of fun, but we use all the precautions that we can.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by jtavares76: [QB] Lymetutu...yikes.
Thanks for forwarding the thread "spinal tap nightmare". It was very informative and confirms my decision not to have a LP done.
Pretty enlightening, huh!
Posted by bettyg (Member # 6147) on :
i had to scroll on by alot of your comments due to ALL BOLD QUOTES.
here's how to just have REGULAR text for quotes vs. harsh, bold quotes; it's really simple after 1st time.
all bolding just hurts my lyme eyes so bad; painful...thanks for your consideration.
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.
NOTE: you do NOT have to use " ", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "bold" codes so it's regular type text we read vs. the dark, harsh/painful bolding, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and bolding is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
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.
Posted by jack (Member # 19527) on :
bettyG: I fixed your bold quote problem here: it allows you to view any thread with quotes and it auto-removes all bolded text:
On a related note, I find all capitalized text very hard on the eyes.
You can also increase spacing inbetween lines using stylish ( in the link above ). Reply on that thread or PM if you want help.
Posted by bettyg (Member # 6147) on :
welcome jack; i'll try out your suggestion tonight; leaving for rest of afternoon and a BIG WELCOME TO YOU!
heartfelt thank you for your expertise Posted by Lymetoo (Member # 743) on :
quote:Originally posted by poohbear74: mine is scheduled for April 13. i am still in the air about it to.
Then you haven't read the "spinal tap nightmare" I posted.
Posted by Keebler (Member # 12673) on :
-
Remember, that even if lyme is somehow found in the CSF (spinal fluid) that you will not be offered the proper treatment.
You would need to jump over a couple more hoops of fire and then, still just be offered between 9 days of Rx - or no more than a few weeks.
Lyme treatment should be no less than 30 weeks of combined protocol. You would need to see an ILADS-educated LLMD for that. IDSA treatment guidelines fall far short of that in many respects.
There is no advantage to a lumbar puncture for diagnositic reasons. A SPECT would serve you much better. While not diagnostic, it can show damage typical to lyme patients.
Bottom line: Being treated by an ILADS-educated LLMD: priceless. No other doctor comes close to a real LLMD.
-
[ 03-19-2009, 02:19 PM: Message edited by: Keebler ]
Posted by troutscout (Member # 3121) on :
Does he know that one study of CONFIRMED Lymies showed that LP only picked up 7% of those that were already CONFIRMED Neuro Cases?
Biggest waste of pain a person could go thru other than dinner at my inlaws.
Trout Posted by poohbear74 (Member # 18766) on :
yes ,I know I am scared I am waiting for the results from Ca to make me change my mind the stories are scary..the sad part is he not just looking for lyme noting else shows but the want to rule out all..
and at this point so do i... HURRY UP C.A.!!!!!
Lets just say i am less and less leaning that way... I think I finally found a LLmd!!!!
I am just waiting for his insurance to kick in.. maybe april sometime... and if all goes well i wont be doing it...
anyone have any suggestions on med to take to get me off these steroids?
I have been on lots and i need a strong anti inflammatory... suggestions.....
thanks
Posted by pab (Member # 904) on :
poohbear74,
Steroids can increase your intracranial pressure.
Posted by poohbear74 (Member # 18766) on :
I have not heard that steroids can increase the pressure???
that's interesting...
Posted by Keebler (Member # 12673) on :
- Infections in the brain can increase cranial pressure.
Steroids are like a super tonic boost to infections and steroids also destroy the immune system all in the same swoop.
---- poohbear -
Be sure not to stop steroids suddenly as that can be very dangerous.
I saw your note about hoping to see a LLMD in April. I'm thinking you should call the LLMD who you will see (do you have the appt set?) and ask him how to transition. You need expert advice about how to do that.
You might also ask about allicin and olive leaf extract in the meantime. This might need it's own thread, too. But, I think it's best to get the guidance from the LLMD who you will be seeing next month ( I hope). -
[ 05-18-2010, 03:10 PM: Message edited by: Keebler ]
Posted by poohbear74 (Member # 18766) on :
what happens when you stop them sudden? I have been decreasing my dosage SLOWLY per docs.. in hopes to get off..
I am not sure it will even work. i just know that i am not doing my body good if it is Lyme.
no i don't have an appt set i have to call the llmd back next week they were getting a new system..
![[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.
![[Smile]](smile.gif)