posted
Many think that response to any Lyme-specific bands matters, including IND - ie indicated, and your tests show several of those.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I saw a lyme literate naturopath and he spoke to dr. S from igenex and they agreed no lyme?!! And I saw a neurologist , he said he doesn't trust igenex and my family dr said the same. I live in eastern New- Brunswick, there is absolutely no help here. I give up!
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
--Dr C of MO
More:
Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
Band 83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
Band 93: The DNA or genetic material of Borrelia burgdorferi.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some naturopathic doctors THINK they are lyme literate but are very far from it. I was fooled by one such for five full years - wasted time, money but it was my only choice then.
See links below in how to find a real LL ND.
You say the neurologist and your family have their opinions but I'd not rely on either. Your family may well love you but they are not experts.
And neurologists are not expert about lyme, either. Far from it in most cases. Very far from it. -
[ 11-29-2014, 04:22 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Topic: Is being a member of ILADS enough? [No, that knowledge base is just a start - here's why] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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And neurologists are not expert about lyme, either. Far from it in most cases. Very far from it. -
True
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Understandable, it is, that you may have few or no real options for accessing an expert &/or treatment. Still, many here have to do what they can for themselves on a shoestring.
Connect with all the area lyme support groups near you. Just connect. It's a start.
If at all possible, do what you can to find a LL doctor. If that is not possible, there are still ways you can be proactive. See the articles / books here:
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I had similar results 6 weeks after I had the classic bulls-eye rash.
I was told that if the "ind" has been a stronger positive, the test would be positive. I DEFINITELY had Lyme, don't rely on the tests.
"Ind" is a weak positive, like saying someone is a little pregnant.
These tests are NOT 100% accurate, not even Igenex.
You could do a challenge dose of doxycycline for a month and then retest. Tests can turn positive after this (but not always). It increases your chances of getting a positive if the test is really that important to you.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Thanks everybody, I don't even know what's going on lately, I am also going through benzo withdrawal, it's hell, I don't know what symptoms are what!
Posts: 9 | From Canada | Registered: Nov 2014
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Lulu, The withdrawal effects from (benzo) is tough, hang in there. Here's some good information on this drug...If you feel you need help with the withdrawal you should talk to your doctor.
If you have been taking a benzodiazepine or Z drug long-term (for more than four weeks) then it can be difficult to stop it because of withdrawal effects.
However, this can be overcome in a variety of ways. One method is to switch whatever medicine you are on to an equivalent dose of diazepam. You can then gradually reduce the dose of diazepam at a pace that suits you.
This keeps any withdrawal effects to a minimum. The dose reduction is commonly done gradually over several months until you eventually stop diazepam completely.
What are benzodiazepines and Z drugs?
Benzodiazepines are a group of medicines that are sometimes used to treat anxiety. Examples include diazepam, lorazepam, chlordiazepoxide and oxazepam.
Some are also used as sleeping tablets. These include temazepam, loprazolam, lormetazepam and nitrazepam. Benzodiazepines are most often used for anxiety and sleeping problems, but they also have other uses. A dose of a benzodiazepine is often given before an operation or medical procedure (midazolam).
Some benzodiazepines are occasionally used to treat muscle spasm (diazepam). Some benzodiazepines are used in treating epilepsy as they can prevent seizures (diazepam, clobazam and clonazepam). Others are used to help people who are dependent on alcohol and trying to stop (chlordiazepoxide).
Zaleplon, zolpidem, and zopiclone are other sleeping tablets but, strictly speaking, are not benzodiazepines. They are known as the Z drugs. However, they act in a similar way (they have a similar calming effect on the brain cells).
When you first start taking a benzodiazepine or Z drug, it usually works well to ease the symptoms of anxiety, or to cause sleep. You can usually stop a benzodiazepine or Z drug without any problems if you take it for just a short time (less than 2-4 weeks).
Why should benzodiazepine and Z drugs be used only for a short time?
When benzodiazepines were first used they were thought to be safe. The problems with their long-term use were not known. In 1981, benzodiazepines were the most commonly prescribed medicines in western countries.
It was because benzodiazepines worked so well to ease symptoms of anxiety and poor sleep that many people came back for more. Some people started to take them regularly.
However, it is now known that if you take a benzodiazepine or Z drug for more than 2-4 weeks, you may develop problems (see below). Therefore, most doctors will now only prescribe benzodiazepines and Z drugs for a short period.
What happens if you take a benzodiazepine or Z drug for longer?
Tolerance After a few weeks of taking a benzodiazepine or Z drug each day, the body and brain often become used to the medicine. In many people it gradually loses its effect.
The initial dose then has little effect and so a higher dose is needed for it to work. In time, the higher dose does not work, and so an even higher dose is needed, and so on. This effect is called tolerance.
Dependence (addiction)
There is a good chance that you will become dependent on a benzodiazepine or Z drug if you take it for more than four weeks. This means that withdrawal symptoms occur if the tablets are stopped suddenly. In effect, you need the medicine to feel 'normal'. Possible withdrawal symptoms include:
• Psychological symptoms - such as anxiety, depression, panic attacks, odd sensations, nightmares, feeling as if you are outside your body, feelings of unreality, or just feeling awful. Rarely, a serious mental breakdown can occur (psychosis).
• Physical symptoms such as sweating, being unable to sleep, headache, tremor, feeling sick, feeling unsteady, a 'thumping heart' (palpitations), muscle spasms, and being oversensitive to light, sound and touch. Rarely, seizures (convulsions) occur.
• In some cases the withdrawal symptoms seem like the original anxiety symptoms. The duration of withdrawal symptoms varies, but often lasts up to six weeks and sometimes longer. Some people who have taken these medicines for a long time continue to have minor withdrawal symptoms for several months after stopping.
Withdrawal symptoms can start a few hours after but can be up to two days after stopping the tablets. They tend to be worst in the first week or so before gradually easing.
You may end up continuing to take the medicine to prevent withdrawal symptoms but, because of tolerance, it no longer helps the original anxiety or sleeping problem.
Some people who take a benzodiazepine or Z drug on a long-term basis believe that the medicine is still helping to ease anxiety or sleeping problems. However, in fact, in many people the medicine is just preventing withdrawal symptoms.
Why should I stop taking a benzodiazepine or Z drug?
There are many good reasons why you should stop. Here are some of them:
• If tolerance has occurred they are no longer effective for the condition for which you are taking them.
• You may become (or already may have become) dependent on them. If this is the case, you will end up just taking the pills in order to avoid withdrawal effects.
• You will have fewer side-effects, so if you stopped them you would be:
o More alert. o More aware. o Less depressed. o Less irritable. o More able to concentrate. o Less drowsy. o Less likely to have accidents while driving.
• Benzodiazepines may interact with other medication. They may also increase the effect alcohol has on you.
• Studies have shown that coming off benzodiazepines and Z drugs can have many benefits. For example, a study on the benefits of stopping long-term benzodiazepines in elderly people found that stopping treatment:
o Had no long-term adverse effects on sleeping or anxiety symptoms.
o Improved memory and reaction times, while people who continued taking benzodiazepines declined in both these areas.
o Increased alertness. o Improved quality of life. • Conversely, studies have shown that older people who continue to take benzodiazepines long-term have:
o An increased risk of fractured hips. o Impairment of memory and mental ability, which may be wrongly thought to be due to dementia.
So, in summary, coming off a long-term benzodiazepine or Z drug:
• Is likely to improve your memory, reaction time, alertness, and quality of life.
• Reduces your risk of falls, accidents, fractured bones, and other injuries.
How should I stop taking a long-term benzodiazepine or Z drug?
If you have been taking a benzodiazepine or Z drug for over four weeks and want to stop it, it is best to discuss the problem with a doctor.
Some people can stop taking benzodiazepines and Z drugs without any difficulty, as they have only minor withdrawal effects which soon ease off. However, for a lot of people the withdrawal effects are too severe to cope with if the medicine is stopped suddenly.
Therefore, it is often best to reduce the dose gradually over several months before finally stopping it. Your doctor can advise on dosages, timescale, etc.
Diazepam withdrawal plan
Often, coming off benzodiazepines and Z drugs is just a matter of very slowly reducing them. Sometimes, however, this isn't possible because of the type of tablet you are taking.
In this situation a common plan is to switch from whatever benzodiazepine tablet or Z drug you are taking to diazepam. Diazepam is a 'long-acting' benzodiazepine that is commonly used. With diazepam, the dose can be altered very gradually and with greater ease compared to other benzodiazepines.
Your doctor will be able to prescribe the dose of diazepam equivalent to the dose of your particular type of benzodiazepine or Z drug. After this, you can decide with your doctor a plan of how to reduce the dose gradually.
You and your doctor will make a plan you are both comfortable with. This can be flexible so you can come off your medication more quickly or more slowly depending on how you are feeling.
A common plan is to reduce the dose by a small amount every 1-2 weeks. The amount the dose is reduced at each step may vary, depending on how large a dose you are taking to start with. Also, the last few dose reductions before finally stopping completely may be less than the original dose reductions, and done more gradually.
The gradual reduction of dose keeps any withdrawal symptoms to a minimum. Occasionally other medication may be prescribed to help you cope with symptoms while you are coming off benzodiazepines.
For example, you may be offered antidepressants if depression emerges whilst you are on a withdrawal programme. If anxiety is a problem, sometimes you may be prescribed a tablet called a beta-blocker, such as propranolol.
Some tips that may help
• Before coming off a benzodiazepine or Z drug it may be best to wait until any life crisis has passed, and your level of stress is as low as can be.
• Consider starting whilst on holiday, when you have less pressure from work, fewer family commitments, less stress, etc.
• Consider telling family or friends that you are coming off a benzodiazepine or Z drug. They may give you encouragement and support.
• Consider joining a local self-help group. Advice and support from other people in similar circumstances, or who have come off a benzodiazepine or Z drug, can be very encouraging.
• If you are taking other addictive medicines in addition to benzodiazepines, you may need specialist help for coming off the various medicines. Your doctor will be able to advise you or refer you on to local services which can help.
Other ways of tackling anxiety and sleeping problems
Benzodiazepines and Z drugs are not the long-term answer to anxiety or sleep problems. If you have anxiety symptoms, there are other ways of tackling your symptoms.
For example, learning to relax, or joining an anxiety management group. If anxiety symptoms persist or are severe, your doctor may advise on other treatments such as cognitive behavioural therapy (CBT).
There are separate leaflets that may help called Anxiety, Insomnia (Poor Sleep), Sleeping Tablets, Stress and Tips on How to Avoid It and Cognitive Behavioural Therapy (CBT).
A final note
Most people who have taken a benzodiazepine or Z drug can successfully come off it. After switching to diazepam (described above), the pace and speed of withdrawal varies greatly from person to person.
Go at a pace that is comfortable for you after discussion with your doctor. For many people, the gradual withdrawal and eventual stopping of diazepam takes several months. However, some people take up to a year to reduce the dose gradually before finally stopping it.
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