posted
ANYONE ELSE OUT THERE BEEN "IN REMISSION" FOR SEVERAL YEARS, NO ANTIBIOTICS, AND HAD NEURO SYMPTOMS START TO RETURN?
9 years ago, give or take a few months, I got shooting pains "from god" (out of nowhere). These were followed by a priclking feeling on my legs, sort of like wearing cheap wool pants to haveing invisible ants living under the skin on my legs.. fill in the rest with the lyme symptom list minus the joint ppain.
Fast forward to september '06 I thought I was making something out of nothing but even me, the queeen of denial, couldn't come up with a good cover story. I had an appt with the neuro I've been seeing for my daytime sleepiness issue, carpal tunnel, then the "back injury".
Now the "pricklies" he attributes to restless leg syndrome (load of bs). He gave me LYRICA, something to treat the really annoying symptoms. (makes me feel like I'm stoned)In the week since I saw him the restless "leg" symptoms have rapidly progressed up to my waist, to my back, and have invaded areas on my arms and head. If it is restless leg , then I must be one huge leg!
I freaked out initially and calmed down when I figured out that if it is lyme, all I have to do is go back to my old doc (haven't seen him in over 2 years) and get back on massive doses of antibiotics.
Now, I go back and forth from calm to fear. Feeling like part of my body is being eaten scares me. Even if I believe there is a cure/treatment.
I always did compare lyme to cancer. They can't ever say you are cured, only in remission. I actually had started saying that I had (past tense) lyme disease. "When I had....it" Don't know if it is back.
ANYONE ELSE OUT THERE BEEN "IN REMISSION" FOR SEVERAL YEARS, NO ANTIBIOTICS, AND HAD NEURO SYMPTOMS START TO RETURN?
(edited through my continued learning process. The longer I'm around here, the more I have to learn)
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
YIKES...that sounds awful! Any chance of a reinfection? Any chance of neurotoxins?
I havent gone years without, but I have gone what felt like years of feeling great and then falling
on my butt with this stuff. Check out chronicneurotoxins.com...what if it is residual toxins
that at a time of stress or something decided to mate. Guess I'm hoping for your sake that it is toxins
as Dr. S's cholestyramine protocol can clean them out for you. Worth checking into. I SOOOOOOO
hope its not the Lymes again! How are you feeling now...still one big RLS LEG? Hope not
Run
Posts: 45 | From NJ | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sheesh BugBarb, I haven't worked my way into remission yet but I just gotta tell you, I loved reading your post. Relapse hasn't hurt your sense of humour.
I'd be hightailing it back to your LLMD sooner rather than later.
Perhaps jumping right on it with a stiff dose of abx will put the cheap wool pants right back on the rack at Woolworths where they belong. I'd be surprised if your neuro will give that a shot but who knows -- maybe he's open minded?
Good luck and I hope you're back to that 90% or better real soon!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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[ 05. March 2008, 09:23 PM: Message edited by: Lymeblue ]
Posts: 983 | From The sky | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
yes---me.
original lyme with tick and rash in 1991. treated for two weeks and had ten great years without any symptoms.
2000 was prolly reinfected. treated 2 months rocephin and then 6 months orals--got to about 90% and stopped treatment for 4 years.
2004 relapse. very very very small chance of reinfection. started as pins and needles too.
have been trying to treat since then. i have other issues that seem to be getting in the way---endometriosis and then docs that messed up surgeries.
i am sorry for your relapse. it was one of themost devastating things in my life. not everyone is the same---some relapse and get better very fast. I hope you are one of them.
Did you treat coinfections? not treating coinfetions is considered to be the main reason for relapse at this point. treat for all coinfections regardless of test results.
welcome back and sorry you are here, best to you, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Rash in Nov. 87, three years no treatment, three years ABX. I went 6 years with no ABX , no symptoms. I was back to running 5 miles a day and scuba diving, I relapsed huge in 2000. Neuro Lyme. Here's wishing you back to a remission
Posts: 160 | From texas | Registered: Oct 2005
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posted
hmmmm.....Daytime sleepiness, carpal tunnel, back injury, restless legs... all sounds lots like lyme to me! Now with the neuro stuff, you can be pretty sure of it.
Sorry you have relapsed!
I had a mostly-remission for a couple wonderful years ( I was undiagnosed, but had been symptomatic for years before that) and then fell on my face with a huge relapse -- no fun!
Hope you get to feeling better very soon.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
My only day to see doc's is friday. I arranged to get off at 230 rather than 6pm. Told the company that way I wouldn't have to disrupt their schedule to do my medical things.
I saw my old lyme doc friday, as he was literally running out of the office. He read the "report" I wrote on myself describing my complaints. Then he ordered the nurse to draw blood. He left, she filled up (I didn't watch) tubes of blood and fedexed them to New Jersey. Apparently, they sent one to a local lab and those results will be back next week. The others will take a couple of weeks. I am not freaking out anymore. I am really sure that I will be put back on antibiotics for however long it will be. The priclkies are being dulled a bit by the lyrica which also makes me happy. I know what to do this time around. There is not mystery as to the cause/treatment. Just a jmatter of waiting for December for my next lyme doc visit. I am sure the pricklies won't get too horribly bad, and if they do, I'll just complain to one of the docs and get the lyrica dose adjusted. Yes, it is a pain in the "donkeys rear end" to have to drive a round trip of 112 miles to see the doctor. But, that is the price for living in a tick infested area for 7 years and live trapping the cute deer mice then keeping them as pets. Now, I snap-trap the mice, let them mummify, nail them to the sign on my cabin, and then coat them with varnish every time I visit......yes, I have a perverse sense of humor....I haven't skinned one of the little dears yet. Thought that would make a wonderful wall decor....
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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Neuro doc persists with restless "limb"syndrome. "Male bovine excrement!" Upped the lyrica from 50mg to 200-300mg daily to control the ever worsening symptoms. I am ok as long as the meds work (meaning, I don't start freaking out)and I don't have to take them at work, which means I can't(think to )work.
Officially as far as the new jersey lab tests, I havve no tickborne diseases.At my doc visit on 2/2, he asked if I had been feeling "lymish".
Do run a body temp of 98.2---98.6----99.0---99.5 subnormal hotter than normal...(hot flashes don't raise your core temp, so they arent the problem?)
will see neuro march 2 and then the lyme doc the next friday. psychiatrist again, after that,,,she is a powerful advocate, doesn't believe in the restless crap.(does keep telling me menopause could be happening to me)
reading up on neuropathy tonight. They say it is NECESSARY to do nerve tests as a diagnostic tool. neuro hasn't done any tests except see if I could balance with my eyes closed.I can. it is SENSORY neuropathy so far. not a motor problem...
RLS is one thing I don't have. PLMDS is another disorder, (they saw in my sleep study)which I agree I have problems with only when I don't take my alertness medication.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E B A C K! ! ! I remember you*)!*)! !*)*!)*!)*!)!*)*!*)!*)!*)!*!
I used to post under AramSarah (exhusband)*)!*! aka Sarah in Santa Cruz!! Good to see you*)!*)! Yup, I know a couple of people who went years without it and it was back. Hope yours goes away AGAIN*)!*)!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
be careful with the nerve tests. they can also be negative even though you experience nueropathy. AND they are very painful. If they do show damage, though, they are a nice thing to waive in the face of your insurance or other people who require hard evidence.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I had been taking daily multivitamin packs, the ones with the huge horse pills, for a couple of months prior to the "RLS" diagnosis. My GP told me to stop taking all vitamins, and to only take sublingual b-12 and folic acid. I have done this everyother day, can't seem to remember daily, since I first went back. Still, need to keep taking more lyrica.
Psychiatrist, added on omega-3, alphalipoic acid, vitamin e and I haven't started coenzymeq10 because it is too expensive at the store and I haven't got online for it at Iherb.
I did decline more antidepresants to cope with the horrendous work stress.
I have educated myself on rls and plmds and neuropathy and am writing my usual report on myself prior to seeing the neuro. I will be careful to include in it the significant words that will trigger the concept that I don't have the diagnostic criteria for rls.
If that fails, I have my GP who has an open mind and will consider disnoses that have cures not simply palliative treatments like rls. I can't live with the idea that I have to be on lyrica or neurontin forever.....in ever increasing doses.
Thank you guys for remembering me and for replying and supporting and giving me your ideas.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
I have dumped the neuro doc. He became increasingly bizarre in his interactions with me. I would give him my written list of problems and he looked like he read them and also listened to what I said. However how he responded did not correlate with what I wrote/said.
He wanted me to drive, at rush hour traffic, taking off time from work, probably 40 miles to a physical therapist who would do MAGIC and help me LEARN TO LIVE WITH MY muscle pain...muscle? I have superficial neuro stuff....I walked out of the office telling him, I wouldnt do it unless I had time to think and do it on my own terms.
He faxed my infor without my permission. I got into the parking lot and read FIBROMYALGIA!!!! He didn't say anything to me about changing the diagnosis...
My trusty old lyme doc/general family doc is now in charge of my entire physical dysfunction. At least he is wise enough to admit he doesn't know what is wrong with me. He has done tests. Nothing. I have tried only a short trial, 3 weeks of abx.
Now I pop the lyrica and get loopy every night. I have a hard time sleeping even when I have taken the melatonin and ...oops that is why i am still up i didn't addthe melatonin to my benadryl...darn...1am....darn.. i will hate it tomowwor.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
A couple of thoughts......
Could this be Morgellon's symptoms?
Also, someone recently posted that their Lyme doc told them that their itching could be caused by the toxins that the Lyme puts out - the body tries to eliminate toxins through the skin if it can't get them out through the organs and GI tract.
I know this to be true of Cancer - many patients start itching terribly from the toxins put out by the tumors. A friend is going through this now.......
So, the toxin aspect is very valid, and perhaps something to bind the toxins and get them out of your system may be one way to try to approach this....
How awful! So sorry for your `relpase' or whatever the heck this is!
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
barb--- how much lyrica are you taking? that stuff can really be potent. I take 75mg at night because it helps me sleep, but it has done NOTHING for neuropathy. anything more than 75mgs and I need to be in the nuthouse. really. trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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I had lyme back in 1994 for a few months, completely "cured" with doxy and have been symptom free for almost 10 years.
A few years ago I experienced RLS - drove me insane. Treated it with magnesium and it eventually got better.
Last year, out of nowhere, major lyme neuro symptoms - hands going to sleep at night, tingling in ears and scalp, dizziness, shoulder aches, etc.
I've been on ceftin, doxy and now azithromycin and I am finally getting better (after 5 months of zith).
Although my LLMD knew nothing about lyme remission and coming back years later, I'm convinced that it what happened - what triggered it to come back I have no idea.
I'm thinking this spyrochete "cyst" theory is not only believable but personal.
Hang in there!!!
Posts: 41 | From Somerset County, New Jersey | Registered: Aug 2006
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posted
Nope - didn't need to since I was "symptom free" and this time around I'm getting better (although it has taken almost 1 year to finally start seeing some improvement).
Posts: 41 | From Somerset County, New Jersey | Registered: Aug 2006
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posted
Have new Doc. Professor of neuroogy at UCLA. Figured if I went there, I ought to get a doc with experience, resources...and avoid going ot a bunch of loser docs.
I am on 300-400mg of lyrica and .5 mg clonazepam as soon as I get home from work. &-9pm. I take benadryl to help combat the insomnia caused by the lyrica. I am completely loaded, like Ive smoked a joint and got drunk.
UCLA doc did hundreds of $$$ worth of tests. I don't have lyme, cancer, diabetes,....I don't have anything he tested for in blood. My lyme doc did the whole lyme panel and I don't have lyme...he says. UCLA doc says it may be related to my lyme and 40% of the time no diagnosis is made.
I am looking at having to go on disability. The nerve pain now starts in the morning some days. It starts earlier in the evening most days. I got written up twice in one day for poor work. I can't think/work when I take the nerve meds. I fear my ability to work is impaired....No, I know it is impaired. I need to go on disability before I get fired. I'm keeping my husband informed, so he is prepared for when I sto working...probably at my next doctor visit.
I take depakote, welbutrin, naltrexone, provigil, tetracycline, cozaar, lyrica, clonazepam...benadryl
I have three weeks vefore my work is required to e up to standards ...if it ins't, i believe i'll get canned.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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adamm
Unregistered
posted
Did you treat for the co-infections too? If you had bart or babs,
it's possible that you had a bug you never touched. Perhaps
it could be from stored Lyme toxins being released?
Well, whatever it's from, I hope you feel well soon.
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I hate hearing this story. It seems you are loaded with meds, for sure! No wonder you are having issues!
Do what is best for you and your family always, first and foremost!!!
Sure wish there was a magic answer for you and for us all.....
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry to here this BugBarb before you start abx try a few b12 shots say 3 in 9 days see if there is improvement your intrinsic factor may be shot it happened to me I feel so much better with b12 injections.
It takes a while for this to show because liver stores b12 then when its deleted over a couple of years because intrinsic factor is shot then the problems show up.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Hey Barb...Did they double check you for babesia and bartonella??
I hope you can find a solution soon!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I agree check into Babs--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Porphyria ?
Cpn ?
----
First question for genetic porphyria screening: Have any blood relatives ever: - suffered severe reactions to medications? - allergic to certain chemicals ? - had neuropsych symptoms similar to what's in links below?
with porphyria -
Purple urine is legend - and it can be true, but not always. Urine does not always show colors, although, depending upon the type the color may differ.
Poor man's porphyria test - place a urine sample (clear glass jar) in the sunshine for a while. If it turns a particular color, photograph it or write a description. That's a start, but not definitive. Absence of color does not mean absence of porphyria.
Some porphyrias are dx through blood or stool, some through urine. All tests should be done for a full panel. There are at least 11 types. Note- this may have to be sent out for testing. Most doctors, most labs know little or nothing about this.
Porphyria is not just genetic. It can be acquired from chemical exposure (environment, heavy metals, or meds) . . . I think it can be secondary and my doctor says it certainly can be chronic with lower levels that would make someone chronically ill, but not move to the acute stages - unless exposed to chemicals (i.e. perfumes, lawn chemicals, household cleaners, diesel fumes, gas stove or certain medicines).
Hep C can cause porphyria so I have to wonder if other infections that put a strain on the liver might also cause this, even if just as secondary during infection and treatment.
Although certain drugs are contraindicated with porphyria, infections should be treated as promptly and thoroughly as possible using drugs from the safe lists (through the foundations listed below).
If porphyria is present, certain drugs (or high drug load) requiring the C P-450 liver detox pathway can be problematic, even fatal. Specific treatment in the ER can save a life.
There is much to self-care with frequent meals - and healthy carbohydrates - being important. High protein diets and fasting can be dangerous for anyone with porphyria.
Even a small amount of alcohol can cause a porphyria attack in those with this. Excess porphyrins can cause cell death.
Exercise intolerance frequently occurs in this, too, due to the increased the strain on the liver. Brain fog, fatigue and pain are common symptoms, too.
Seizures are not uncommon, and my take on restless leg syndrome is that it can be a kind of myoclonus which is getting into seizure terrority.
NMDA receptors being too high can also trigger RLS or myoclonus. Magnesium can help. However, if porphyria is a player, it may not be enough.
----------
Through PubMed: Toxicol Appl Pharmacol. 2006 Jul 15;214(2):99-108. Epub 2006 Jun 16.
Porphyrinuria in childhood autistic disorder: implications for environmental toxicity.
excerpt: Following DMSA there was a significant (P = 0.002) drop in urinary porphyrin excretion. These data implicate environmental toxicity in childhood autistic disorder.
* Male mice that received diets containing 5% schisandra berries exhibited a threefold increase in the important liver cytochrome P-450 antioxidant system (Hendrich et al., 1983).
Equally important is the enhancing effect of schisandra on the status of liver mitochondria in rats (Ip et al., 1998).
-----
poster's note for Schisandra: the rise in these enzymes for this purpose is a good thing. Porphyria is from the lack of enough particular enzymes - not the digestive type though. These are not available to just buy and take. The liver has to make them.
Milk Thistle, too, has a positive effect but I'll not add that here.
As most porphyrias are rare conditions, general hospital labs typically do not have the expertise, technology or staff time to perform porphyria testing. In general, testing involves sending samples of blood, stool and urine to a reference laboratory.[6]
All samples to detect porphyrins must be handled properly. Samples should be taken during an acute attack, otherwise a false negative result may occur. Samples must be protected from light and either refrigerated or preserved.[6]
Chlamydia Pneumoniae in Chronic Fatigue Syndrome and Fibromyalgia -
See what he has to say about secondary porphyria in relation to Cpn. This article seems to mirror lyme in some ways. And some lyme pts. may also have this.
Secondary Porphyria: what you should know before starting a CAP
excerpt:
Symptoms of Porphyria- Porphyria may affect the nervous system or the skin.
When porphyria affects the nervous system, it can cause:
chest pain shortness of breath abdominal pain
nausea muscle cramps weakness
hallucinations depression anxiety
paranoia seizures
=========
-
[ 11. February 2008, 08:24 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi BugBarb,
Could you please get a second and possibly third opinion from a LLMD?
It sounds like a relapse; sounds like you've been through all this, "There is nothing wrong with you" before.
Your symptoms seem to be galloping along. Please don't wait!
Lyrica: I was dopey for the first few weeks, and then fine.
It's helped me tremendously. I take it 4 times / day @ 75mg each, and I find spreading out the dose helps me manage my symptoms.
Best wishes for a speedy second remission,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Virus Induced CNS Dysfunction describes the subset of Chronic Fatigue syndrome (CFS) patients who have elevated HHV-6 and EBV titers and clinical symptoms of a viral syndrome with neurocognitive complaints and sustained fatigue.
Other viruses may also play a role in defining CFS patient subsets.
USE OF VALGANCICLOVIR IN PATIENTS WITH ELEVATED ANTIBODY TITERS AGAINST HUMAN HERPES 6 (HHV-6) & EPSTEIN-BARR VIRUS (EBV) _who were experiencing central nervous system dysfunction including long-standing fatigue_
A Randomized, Placebo-Controlled and _Double Blind Study at Stanford University
Drs. Jose Montoya and Andreas Kogelnik of Stanford Hospital Infectious Disease Clinic are planning a double blinded placebo controlled clinical trial to determine whether patients with Viral Induced CNS Dysfunction, a subset of patients with Chronic Fatigue Syndrome, would benefit from valganciclovir treatment.
posted
update. My coworkers did an intervention on me on 2/15. Really weird feeling to have the staff tell ME to leave. One guy led it and asked me if I was going to be ok today after seeing my deterioration over that past month. That cut through my defenses. I almost broke down in tears. "I want to be ok, but I'm not"
I walked out of work and made an appointment with the UCLA professor of neurology for the next day.
"I don't believe your neuropathy is that bad." "It doesn't follow the typical pattern of affecting the hands and feet." "I want you to go see your psychiatrist, get reassessed and have her adjust your medications." "I'll write a note for six weeks of disability." "Forms?, your company may have some they want me to fill out. Have them send them to me." Whoosh he was gone.
I felt like he was trying to pawn me off to my psychiatrist because he thinks it is in her scope of practice. Geez, I saw her and she said, "What are you doing here? You have a neurological problem. There isn't anything I can do with your meds. The neurologist needs to fill out the disability forms."
I can't work because I am either to distracted by the pains that "aren't bad enough" or I take lyrica, feel no pain and can't be loaded at work. What will change, what will I do in the next month that will make me able to work? I don't think that the magic fairy is going to wave her want and wipe out my nerve pain.
Why DO I HAVE THIS GENERALIZED, RANDOM, SHOOTING, STABBING, ITCHING, BURNING, SORE LIKE A BRUISE, PRICKLING, ELECTRICITY RUNNING THROUGH PARTS OF ME feelings???????? Any ideas. If it is "post lyme disease whatever" either active disese which has been ruled out by tests or if it is my lyme damaged nerves being irritated by something new.....I want a diagnosis. What can I look up online that will help me diagnose myself? Any keywords, phrases? Certain symptoms to search for? HELP!!!!!!!!!!!!!!!!!!!!
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Were bitten again? Or is this a relapse for certain.
I have had all the symptoms you describe, everyone and more - total 44 in all.
I'd like to think once my neuro lyme is gone, it is gone for good, if it ever is gone! BUT we live in a highly endemic area (no wait, there is no Lyme here- sorry) and I was bitten the last 2 springs, hmmmm wonder what this spring holds for me.
Sorry to hear you are having symptoms again, I can't imagine feeling good so long and then feeling this crap all over again.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
bugbarb, I read through the beginning and end of this thread but admittedly not through the whole middle...so if this question has already been answered, I apologize in advance:
You initially mentioned that your LLMD sent blood work to a lab in NJ and it all came back negative. My question is: did you ever get tested from igenex? If not, that's somehting you might want to consider.
Also, as many others have mentioned, what about co-infections? A number of your symptoms sound like those I had with my co-infections. If you didn't treat those initially, maybe they have just been dormant.
I really do hope you're able to find some answers and get on the right track. Seems to me a neuro is just spinning your wheels again, though I need to also say I'm definitely NOT a medical doctor.
I was initially infected in 1996, treated with a month of abx. Everything was dormant for about 9 years then came at me wtih a vengeance in 2005. I've been on abx since.
Keep us posted, Barb!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by BugBarb: update. My coworkers did an intervention on me on 2/15. Really weird feeling to have the staff tell ME to leave. One guy led it and asked me if I was going to be ok today after seeing my deterioration over that past month. That cut through my defenses. I almost broke down in tears. "I want to be ok, but I'm not"
I walked out of work and made an appointment with the UCLA professor of neurology for the next day.
"I don't believe your neuropathy is that bad." "It doesn't follow the typical pattern of affecting the hands and feet." "I want you to go see your psychiatrist, get reassessed and have her adjust your medications." "I'll write a note for six weeks of disability." "Forms?, your company may have some they want me to fill out. Have them send them to me." Whoosh he was gone.
I felt like he was trying to pawn me off to my psychiatrist because he thinks it is in her scope of practice. Geez, I saw her and she said, "What are you doing here? You have a neurological problem. There isn't anything I can do with your meds. The neurologist needs to fill out the disability forms."
I can't work because I am either to distracted by the pains that "aren't bad enough" or I take lyrica, feel no pain and can't be loaded at work. What will change, what will I do in the next month that will make me able to work? I don't think that the magic fairy is going to wave her want and wipe out my nerve pain.
Why DO I HAVE THIS GENERALIZED, RANDOM, SHOOTING, STABBING, ITCHING, BURNING, SORE LIKE A BRUISE, PRICKLING, ELECTRICITY RUNNING THROUGH PARTS OF ME feelings???????? Any ideas. If it is "post lyme disease whatever" either active disese which has been ruled out by tests or if it is my lyme damaged nerves being irritated by something new.....I want a diagnosis. What can I look up online that will help me diagnose myself? Any keywords, phrases? Certain symptoms to search for? HELP!!!!!!!!!!!!!!!!!!!!
Barb I remember you why arent you going back to a LLMD???
Infection is infection get treated again and seriously try B12 shots too!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by BugBarb: update. My coworkers did an intervention on me on 2/15. Really weird feeling to have the staff tell ME to leave. One guy led it and asked me if I was going to be ok today after seeing my deterioration over that past month. That cut through my defenses. I almost broke down in tears. "I want to be ok, but I'm not"
I walked out of work and made an appointment with the UCLA professor of neurology for the next day.
"I don't believe your neuropathy is that bad." "It doesn't follow the typical pattern of affecting the hands and feet." "I want you to go see your psychiatrist, get reassessed and have her adjust your medications." "I'll write a note for six weeks of disability." "Forms?, your company may have some they want me to fill out. Have them send them to me." Whoosh he was gone.
I felt like he was trying to pawn me off to my psychiatrist because he thinks it is in her scope of practice. Geez, I saw her and she said, "What are you doing here? You have a neurological problem. There isn't anything I can do with your meds. The neurologist needs to fill out the disability forms."
I can't work because I am either to distracted by the pains that "aren't bad enough" or I take lyrica, feel no pain and can't be loaded at work. What will change, what will I do in the next month that will make me able to work? I don't think that the magic fairy is going to wave her want and wipe out my nerve pain.
Why DO I HAVE THIS GENERALIZED, RANDOM, SHOOTING, STABBING, ITCHING, BURNING, SORE LIKE A BRUISE, PRICKLING, ELECTRICITY RUNNING THROUGH PARTS OF ME feelings???????? Any ideas. If it is "post lyme disease whatever" either active disese which has been ruled out by tests or if it is my lyme damaged nerves being irritated by something new.....I want a diagnosis. What can I look up online that will help me diagnose myself? Any keywords, phrases? Certain symptoms to search for? HELP!!!!!!!!!!!!!!!!!!!!
Barb get back to a LLMD and get treated infection is infection and also get a few B12 shots hurry!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi BugBarb,
It sounds like your doctor was trying to diagnose your condition based on blood tests instead of making a clinical diagnosis based on your clinical signs.
He said you don't have the disease based on your blood test results, but he's got it backwards.
You need a true LLMD who will look at the whole picture and be able to interpret your lab tests in relation to your symptoms.
Did you get a copy of all your blood work?
What were the results of your Lyme tests? Were there any Lyme-specific bands?
Did the physician use a lab that specializes in Lyme tests and tests for coinfections? It sounded like your physician used a standard lab.
I think you're putting your health in jeopardy going to doctors that don't have a clue about Lyme...in addition to wasting your time, energy, and money.
You could be getting appropriate treatment right now. You know how fast this stuff can cause more damage.
Please get a LLMD and take good care of yourself.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I was seeing a neurologist for another problem. When I first felt neuropathy-pain coming on, I IMMEDIATELY went to the doc in Malibu (where it is officially exists). He took vials of blood and sent them to a lab all the way cross the country ( I'm in california). The lab is definitely a lyme lab. I looked at the results, took them home and eventually threw them away. I show nothing. HOWEVER I have never tested positive for anything. the only test that ever comes up with abnormalities are the nerve tests. I have nerve damage. DUH! i plan on asking for test results from the current UCLA Professor of Neurology that has been of as much help as anyone else. Even my lyme doc doesn't think it is lyme.
When I was off work for lyme for 5 years, it was different. I was physically and cognitively disabled. This time, I (Dr. Barb) can't work because the medications noodle my brain. Even at the lowest dose 16 months ago, I couldn't function at work. I am going nuts! I actually want to work. I haven't made the transition/don't want to to long-term disability.
I want to come up with something people (doctors) can slip over their arm that would reproduce my systemic symptoms. If they felt in their arm, what I felt in my body, they might be more sympathetic. See general support for my fantasy....`
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
My b 12 levels were checked and said ok. Would shots help even if my levels test normal?
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
B12 helped me a lot yes they probaly would help barb the tests just show whats in blood not usually done under demand when your bodies low it puts what it has out for use but it may not be enough. I forget your age but anyone over 50 can benifit from b12 shots and since you have been taking abx long time you may be like me the body cant pick up fresh new b12 because intrinsic factor is gone or severly disrupted. What your body dosent use will be stored in liver and whats left over will be passed out.
Hey its worth a try also youll need to take after injection some b6 or a good bcomplex vitamin it helps with b12 use.
And start taking a good probiotic again maybe help restore the intrinsic factor?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thanks for the ideas. Ever since my husband has been coming home and looking at me going...."Aren't you freezing? Why don't you have the heater on?" And I stick out my arm and say feel this, do I feel cold? I have been more regular about taking my temperature. Funny, I remember that I've been complaining to my coworkers that it is toohot in the office...they go..no, it's fine....and blame it on hot flashes...but those don't last for hours...... My temp in the last couple of weeks has run anywhere from 97.1 to 99.2 or maybe a it higher. Exactly the way it was "when I had lyme". I didn't really think it was lyme after my lyme doc did the tests and these symptoms seem different. I don't remember feeling like I was being skewered by little gremlins weilding miniature swords.(except when I od'd on flagyl, but that is another story) I remember more loss of sensation, loss of muscle function, motor stuff and feeling like ants lived under my skin, and being hypoersensitive to touch. It is only recently that I am thinking lyme may well be the culprit. I came back to the lymenet because I knew I could get support from you guys, no matter what the diagnosis turned out to be.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ya know, just because your symptoms this time are different doesnt mean it isn't Lyme. Do they fit on the symptoms list?
Many of us experience ever changing symptoms over the years. Who knows why. It may be that your Lyme is back, just rearing it's ugly head in some different ways.
Perhaps some antibiotics will help tease it out; if you herx, you know something's rotten in Denmark.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ya know, just because your symptoms this time are different doesnt mean it isn't Lyme. Do they fit on the symptoms list?
Many of us experience ever changing symptoms over the years. Who knows why. It may be that your Lyme is back, just rearing it's ugly head in some different ways.
Perhaps some antibiotics will help tease it out; if you herx, you know something's rotten in Denmark.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I was taking tetracycline for a couple of months for a scalp skin problem. I decided to stop it and see what would happen. That is when the body temp started to noticeably fluctuate,,,abnormally.
I haven't emailed my neuro doc in a week or so and should keep him apprised of the situation. I was thinking that I might make an a ppointment with my lyme doc/primary care doc just to fill him in and have him check me over. I don't know.
Both docs are about a 1.5 to 2 hour drive each way. My husband has been nice and driven me to the neuro the last 2 times. 3 hour drive for a 15 inute visit.....oh well.
I dont' know what I have. I know it isn't purely stress induced. Otherwise, I would have contracted it wayyyyy earlier. got to go to sleep. got to take another lyrica to kill the last of the gremlins off for the night. that makes 400mg lyrica and 1 mg klnoopin, 50mg benadryl, a couple of melatonin, and my handful of psych meds.....better living through modern pharmaceuticals.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Barb, I agree with the folks who are suggesting you see another LLMD. I am trying to fathom an "LLMD" who makes a decision based on lab tests. We all know that even the best test done by the best labs are about 70% accurate at best. I know of no truly Lyme-literate physician who would dismiss Lyme based on a negative test.
As for your experience at the med center, well, here in Vermont, we warn people not to go to FAHC or Dartmouth, and tell them why: despite a known history of Lyme, they will get a lot of expensive tests that will all be negative, and then be told they have post-lyme syndrome or CFS or fibromyalgia. Or, if the place is a bit more honest, that they just don't know.
We get these folks to an LLMD, and guess what: they go on abx augmented by nutritional supplements and sometimes herbal remedies, and they start getting better. Sometimes it takes a long time, and some people get to repeat this routine.
It's worth it.
Some possibilities: 1. You are relapsing, and the symptoms are overwhelming your immune system. If this is happening, you have probably been building up to it for a while. ALL of your antibodies are tied up trying to fight this infection, so the tests are negative because the antibodies are not available.
2. You may have a new infection, and the tests are not picking it up. We NEVER build immunity to Borrelia. Example: I was infected the second time while I was sick already with the first undiagnosed BB infection. I found the tick, had the rash, and still was not diagnosed (west coast, head in the sand). Each infection had its own set of symptoms. When I was finally diagnosed and treated (after moving to the east), I had two herxes each month, ten days apart. It is possible for me to pick up more. 1 in 2-5 ticks are carriers where I live.
3. And then there are the co-infections, two or three of which are notorious for evading detection by lab tests. Your symptoms are suggestive of a couple of them. Combine one or two of these co-infections with BB, and the mix makes treatment of both more complicated. I had three of a possible five. I didn't really begin to respond to treatment until my doctor decided the negative tests were wrong and treated me for bartonella based on symptoms. I started getting better.
Not out of the woods yet. I do well, but am showing signs of a relapse. Tomorrow I have an appointment with my LLMD, and together we will decide on a treatment approach for me. I suspect it will involve another round of abx, but I also know that each time I have to do this, I get to a higher level of functioning and my baseline gets higher.
Good luck. I sure hope things work out for you. Don't give up.
Hugs, Dayle Ann
-------------------- ..." ...almost basically together situation." unknown quote from somewhere Posts: 441 | From USA | Registered: Sep 2001
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posted
I am gathering information to give to both doctors. I didn't have the up and down body temp information until recently. I am ging to chart my temps, the time of onset of "pricklies and gremlins" daily and how I have felt (a few days I fels like I had the flu). I have always described lyme as a cross between the flu and a hangover with some added fun thrown in. I have noticed some hypersensitivity, but haven't been good about documenting it. Armed with this info my lyme doc may change his mind. My question for another forum is..if the neuro says go back to work andthe lyme doc says no, but the neuro was the one who put me on disability first....how does disability handle this. Or maybe I'll be treated by both at the same time and won't have to worry. I'm thinking lyme. I'd rather face months of antibiotics than any more time on lyrica and klonopin.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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but even me, the queeen of denial, couldn't come up with a good cover story. ![[bonk]](graemlins/bonk.gif)
I had an appt with the neuro I've been seeing for my daytime sleepiness issue, carpal tunnel, then the "back injury".![[Roll Eyes]](rolleyes.gif)
symptoms have rapidly progressed up to my waist, to my back, and have invaded areas on my arms and head. If it is restless leg , then I must be one huge leg! ![[confused]](graemlins/confused.gif)
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initially and calmed down when I figured out that if it is lyme, all I have to do is go back to my old doc (haven't seen him in over 2 years) and get back on massive doses of antibiotics. 
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