posted
having ruff time-been psoting a lot for me a newbie
have neuro symtpms and today had severl tremors in my leg, one severl weeks ago btwn ceftin (about a month) and mepron+zithromax (oral-also about a month now)
scared.
what should i do about tremors?
my doc here says dhe can't do IV meds
should i be doing them, i know hard to say w/out all my info and not being a doc. but what does the protocal seems to be?
thanks!!!
Posts: 208 | From Santa Fe | Registered: May 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Jif,
I know it's scary. I've been having motor tics and it's the scariest part of the Lyme for me. Not being able to control my body is really the worst part.
Have you only been in treatment for two months? If so, the tremors may be part of a herx. It might be that the treatment is working. Two months is not very long to be on any one form of treatment. You may want to stick with it for a bit longer and see what happens before switching to IV.
I am personally trying to fight this without IV. There are positives and negatives of IV, and I'm not ready for the negatives.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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liz28
Unregistered
posted
If you still have babesia, it can interfere with Lyme being cured. You could be on IV for months, only to relapse the moment you stop.
There are several stronger antibiotics available which could lower these symptoms a few notches. Read Dr. B's 2005 Treatment Guidelines for some suggestions. They are listed in many places throughout this website.
Please stay tuned on the babesia issue. It has become a hot topic as more and more people experience treatment failures on our most advanced antibiotics. As more people focus their attention on this problem, share information, and get fed up with inadequate treatment for such a serious disease, you will see some rapid advances made.
If you do not have babesia or other co-infections, and are just treating Lyme, then IV may be of great help. It's hard to say without knowing your full medical background.
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posted
If you have Lyme Disease in its later stages, the answer in just about every case is to IV. They are much more effective. The only time you wouldn't IV is in the event of monetary issues. All other times, when faced with this question, and the individual has late stage/chronic Lyme, the answer is IV.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
I'm sorry you're having such a rough time. It can be very scary, so many crazy symptoms and confusion over how to treat.
Hang on, it's going to be a long bumpy ride. But, many here can help you.
Is your doctor LLMD? Can you discuss your concerns with your doctor? If not, sounds like you need to find an LLMD.
Have you been tested for or diagnosed with co-infections? Will your doctor be treating for those, too?
I would suggest that you read, as best as you can, lyme-brain and all, DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES by Joseph J Burrascano, Jr., M.D. Read what you can. Take a break. Use a bright highlighter. Write questions and comments in the margin as you go. Re-read.
LYME DISEASE TREATMENT Pharmacology . Kinetics of killing B. burgdorferi - Pulse therapy; cell wall agents vs. doxycycline . Critical to achieve therapeutic drug levels . Tissue penetration of the antibiotic . Intracellular site of action . Alternate forms of B. burgdorferi - Cell wall agents vs. other mechanisms . Antibiotic combinations
ROUTE OF ADMINISTRATION Repeated Antibiotic Treatment in Chronic Lyme Disease (Fallon, JSTBD, 1999) . No response to placebo . Slight benefit from oral antibiotics . Intramuscular benzathine penicillin more effective than oral antibiotics . Intravenous therapy most effective
INDICATIONS FOR INTRAVENOUS THERAPY . Abnormal spinal fluid (WBC, Protein) . Synovitis with high ESR . Illness for more than one year . Age over 60 . Prior use of steroids . Failure or intolerance of oral therapy
INTRAVENOUS THERAPY . Ceftriaxone (Rocephin) still used the most - Current recommendation: 2 grams twice a day, 4 days in a row each week . more effective . safer, and better lifestyle . can use peripheral IV line - May also prescribe Actigall to prevent gallstones (Bb in gallbladder!)
BICILLIN-LA . Injection of long acting penicillin- "Benzathine Penicillin" . Efficacy is close to that of IV's! . 1.2 million U- 3 or 4 doses per week . No GI side effects and minimal yeast . Excellent foundation for combination Rx . Given for 6 to 12 months
TREATMENT DURATION . Early infection - Four to six weeks to bracket an entire B. burgdorferi generation cycle
. Late Infection - Open ended therapy that must continue until signs of active infection have cleared - IV for 3 to 6+ months, then oral or IM maintenance therapy if tolerated and effective - May need to continue treatment for months to years
KEY POINTS- I . In chronic Lyme Disease, infection may persist despite prior antibiotic therapy . Repeated or prolonged antibiotic therapy may be necessary- follow 4-week cycles . Illogical to follow serologies . PCR positivity and low CD-57 counts imply persisting, active infection . Search for co-infections (clinical diagnosis!)
KEY POINTS- II . Treat co-infections . Do not use too low a dose . Target all morphologic forms of Borrelia . Appropriate route of administration . Appropriate duration of therapy . Supportive measures
CO-INFECTIONS IN LYME . Nearly universal in chronic Lyme . Symptoms more vague, and overlap . Diagnostic tests LESS reliable . Co-infected patients more ill . Co-infected patients more difficult to treat
CO-INFECTIONS IN LYME WHAT IS THE MOST COMMON TICKBORNE INFECTION IN THE NORTHEAST?
Bartonella . More ticks in NE contain Bartonella than contain Lyme . Clinically, seems to be a different species than "cat scratch disease" . Gastritis and rashes, CNS, seizures, tender skin nodules and sore soles . Tests are insensitive! (serologies and PCR) . Levofloxacin (Levaquin) is drug of choiceconsider adding proton pump inhibitor
PIROPLASMS (Babesia species) . Many different species found in ticks (13+) . Not able to test for all varieties . WA-1 more difficult to treat than B. microti . Diagnostic tests insensitive . Chronic persistent infection documented . Infection is immunosuppressive
Babesia Testing . PCR and Serology . Fluorescent In-situ Hybridization Assay - Fluorescent-linked RNA probe - Increases sensitivity 100-fold over conventional Giemsa-stained smears . Enhanced smears- - Buffy coat - Prolonged scanning - Digital photography
BABESIA SMEAR Conventional blood smear
Fluorescent In-situ Hybridization Assay Babesia FISH
Treating Babesiosis . Is a parasite, so is not treated with antibiotics . Can be treated while on Lyme medications . Clindamycin + quinine rarely used . Atovaquone (Mepron) plus azithromycin for 4 to 6 months . Malarone . Added sulfur . Added metronidazole (Flagyl) . Artemesia
Ehrlichia . Can cause acute and chronic presentations . Acute- sudden high fever, severe headaches, very painful muscles, low WBC counts, elevated liver enzymes . Chronic- same, but not as severe . Test with serology, PCR or smear . Treat with doxycycline or rifampin 40 J. J. Burrascano, MD April 24, 2004
Mycoplasma . "Chronic fatigue" germ . Not clear its origin or source . More often seen in the immunosuppressed . Test with PCR . Treat with doxycycline and add fluoroquinolone . Erythromycins & rifampin, with added hydroxychloroquine OK but less effective
Other Co-infections . Especially in the immunosuppressed . Chlamydiae . Viruses - HHV-6, CMV, other herpes . Yeasts . Others
DANGEROUS MIX! . Co-infections missed in Lyme patients . Co-infected patients more ill . Babesiosis and Ehrlichiosis can be fatal! . Lyme treatments do not treat Babesia or Bartonella . One reason for "treatment-resistant" Lyme . "Silent infections" may be transmitted by transfusions
ASSOCIATED CONDITIONS Neurally Mediated Hypotension . Dehydration, autonomic neuropathy, pituitary insufficiency . Paradoxical response to adrenaline - profound fatigue - adrenaline rushes and palpitations - unavoidable need to lie down . Diagnose with tilt table test performed by a cardiologist, and pituitary function tests
ASSOCIATED CONDITIONS Hormonal Dysfunction . Significant disturbance of the hypothalamic-pituitary axis . Extremely difficult to diagnose . When corrected, are tremendous benefits! . A major key to the debility in chronic Lyme
ASSOCIATED CONDITIONS Hormonal Dysfunction . Chronic lack of stamina . Loss of libido . Intolerance of stress including Herxheimers! . Unexplained weight gain . Hypersensitivity to the environment . Persistent encephalopathy despite Lyme treatment
ASSOCIATED CONDITIONS Borrelia Neurotoxin . Effects - Neurologic dysfunction - Cytokine activation - Hormone receptor blockade . Testing for neurotoxin: - Visual contrast sensitivity test - Measure cytokine levels - Test for insulin resistance . Treat with bile acid sequestrants
ASSOCIATED CONDITIONS Cerebral Vasculitis . Contributes to encephalopathy . Vascular headaches . Seen on SPECT brain scans
SPECT BRAIN SCANS . Reflects blood flow and health of the nerve cells . Pre and post-Diamox scans . Proves the symptoms are real! . Useful in differentiating Lyme Disease from a psychogenic illness . Can be done serially to reflect clinical changes
SUPPORTIVE THERAPY . NUTRITIONAL SUPPORT - Blend of multivitamins, B-complex, CoEnzyme Q-10, and magnesium - Essential fatty acids - Low glycemic index, high fiber diet - Absolutely no alcohol . MANAGE YEAST OVERGROWTH - Oral hygiene, acidophilus/yogurt - Low carbohydrate diet
METHYLCOBALAMIN . Prescription drug derived from vitamin B12 - Aids in healing the central and peripheral nervous system - Documented benefit in strength, energy and cognition - Helps restore normal day-night cycle - Improves T-cell immune responsiveness . Must be injected daily for 3 to 6 months . Available only as a "compounded drug" . Excellent safety profile
. ENFORCED REST; NO CAFFEINE - Must try to prevent afternoon energy sags - Proper sleep is essential . REHAB AND EXERCISE PROGRAM - Required for a full recovery - Intermittent program one to three days per week - Toning, stretching, posture, balance - Aerobics are not allowed until nearly fully recovered
ALTERNATIVE THERAPIES THREE CATEGORIES: . Known to be helpful . Possibly helpful . No proven benefit
ALTERNATIVE THERAPIES: KNOWN TO BE HELPFUL . Vitamins - Multi + Co-Q 10 + B complex + EFAs + Mg . Hyperbaric oxygen therapy - Monochamber preferred; three 30-day dives, one month apart . Eastern medicinals . Exercise program
ALTERNATIVE THERAPIES: POSSIBLY HELPFUL . Immune modulation - Reishi spore extract, transfer factor - IVIG only if deficient . Vitamin C . Acupuncture
ALTERNATIVE THERAPIES: NO PROVEN BENEFIT . Colloidal silver . Heat therapy - Sauna, infrared, hot tubs . Rife machines
Good luck, don't give up. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by LYMESCIENCE: If you have Lyme Disease in its later stages, the answer in just about every case is to IV. They are much more effective. The only time you wouldn't IV is in the event of monetary issues. All other times, when faced with this question, and the individual has late stage/chronic Lyme, the answer is IV.
I've never heard this. I have heard of many people in later stages getting better without IV. I have also heard of people starting with IV having a lot harder with resistant bacteria if they stop treatment too soon.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Fallon found that orals were somewhat helpfull, IM was more helpfull, but IV was the best. Placebo did nothing. Some say the IM Bicillian approaches IV in terms of efficiency.
Listen, it doesn't matter about antibiotic resistance, what matters is getting to remission, and that is just not as likely with orals. If that were the case, none of us would go on IV.
Plus the drugs IV are much stronger. If you want to get rid of Lyme, and there are not monetary issues at stake, or some other health issues that would make IV improper. The choice is IV therapy.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Huh, thats an excellent question. "How long on IV before resistant Lyme"
Personally, I don't believe in resistant Lyme. As a matter of fact, Lyme develops resistance, but very slowly. While it does have this capacity, it mostly uses other means of evasion.
If a person is not repsonding to therapy, treat the co-infections. There are numerious accounts in the peer reviewed literature that demonstrate this fact. The opposing argument concerning the co-infections going away on their own has some, but very little scientific documentation.
As a rule of thumb, treating the co-infections gives the Lyme Bacteria less to work with imunologically speaking.
As far as my belief that antibotic restance is a crock of crap, I still believe its a crock of crap. The exception may be this so called antibiotic resistant Lyme athritis spoken of by Allan Steere. But in general, when you develop resistance to any Drug, that is the time to switch drugs. By doing that, you kill the ones which were resistant to the former drug.
The point here is that dead bacteria do not mutate.
This is a point which was highly emphasized by Dr. B in a talk he gave several months ago in Reston, Va.
Keep that in mind, "dead bacteria do not mutate"
IV meds are still not an overnight cure, and that must be remembered. It is well known that in approximently 10 percent of early Lyme treated with CDC standard regimines, that this will fail to eradicate the Borrelia organsim.
The CDC stops short of saying that these surviving Borrelia cause symptoms, but I think that its quite clear that they do as evidenced by the overwhelming controversy surrounding Lyme Disease.
An important point to remember is that everyone agrees that this survival thing happens in very early Lyme Disease, when its treated immediatly upon the presenation of the EM rash.
That begs the question, if early diagnosis and treatment result in a 10 percent failure rate.
What happens when people are not diagnosed early? What percentage of people have surviving bacteria at later stages after standard treatment?
The truth is that the IDSA and the CDC are on a very slippery slope. Science will eventually catch up to them. The only way for them to excape a public relations nightmare is the hope that they develop an effective vaccine. That way, the people who got sick with Lyme disease will eventually die out, leaving no one to complain that because the IDSA had been wrong all those years earlier, many people had suffered.
By that point, hopefully, Lyme will be a thing of the past, but the price we may have to pay for a good Lyme Vaccine is that we have to "forgive" the CDC and the IDSA for their crimes against humanity.
Posts: 559 | From Cary, NC | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Jif
I know its scary to suffer from neuroborreliosis. I did for many years with major neuro symptoms and was almost catatonic at one point . Couldn't talk right or follow conversations.
If you have a high germ count than going orals in the beginning can be a good idea. Going IV if your germ count is too high can be brutal and you can have too much herxing or "die off"
IV was good for me because most of my major symptoms where neuro in nature. I feel that the IV crossed my blood brain barrior easyier than with orals.
I did 6 months of IV but still needed the last 2 years on orals,which did bring me around alot too. The last treatment for babs in jan-march showed some marked improvements also.
But everyone's different. I know many people who have done orals only and gotton better, If the right combo of meds where taken. Specailly the ones that cross the BB barrior and in high enough doses.
You need a very good LLMD who is qualifyed to make this judgement. Would you consider getting another opinion from another LLMD?
hang in there and never lose hope
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
All I can tell you is our exoerience. I had IV Rocephin, maybe two years into lyme. Positive PCR for lyme and neg for co-infections tested. No lasting improvement, if anything my vision and neuro issues were accelerated by rocephin.
LLMD #2 testes me fo cos-again, bart shows up. I start long term tetra. Start to improve about 10 months into treatment. New round of co-testing adding more co-infections. Tested positive for Rocky mountain Spotted fever and mycoplasma.
I believe the 3 co-infections prevented the maximium effect of the rocephin. Moral treat for co-infections before IV.
My son had lyme about 3 years before treatment.( I was too sick to figure it out) We decided to try long term orals for him before IV and he has made wonderful progress- He's off rock climbing today!( I gave him meds BEFORE he left) Hey, I don't want those keets to have a chance in the world should be get bitten!
He is much better than I am. The same or better progress can be made with either course. I think the important point is that improvement needs to happen. I got worse on IV, should have been a signal to the doctor. I was just plain sick for many months at the beginning of orals.
I think you are not doing any harm by treating long term with orals and addressing co-infections and looking at your progress in 6 months and asking the question again.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
There probably is no right or wrong answer just one you and your LLMD come up with together that makes you both happy.
I've had 3 piccs (sepsis, thrombosis, blood clot) all pulled, one two days ago, had a central port that i couldnt handle due to the radiculopathy pain when they stuck me and some other issues - I'm worse than i've ever been after 4 years of IV meds - NO i'm not saying don't do it, just that there are stories on both sides and PLENTY of risks to IV - please do what u feel comfortable doing only.
I wish you much luck.
Posts: 799 | From home | Registered: Sep 2004
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posted
I'm 90% well after 6 yrs of treatment....basically five yrs of oral abx. I never had IV. You CAN get well on orals.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Someone posted recently that Dr B still has lyme and cancer as well. Is that correct?
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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