posted
Okay ...I need some advice .....All my testing has been negative. I am getting worse neurologically.
I was bitten years ago and I believed it went dormant until 2011 with a traumatic event. I have had numerous blood work for all rare diseases,lupus, etc...all negative.
Now my immune system is surpressed as recent blood work noted that. I will start a 6wk regiment of IV nutriment.
Seriously considering changing doctors. Do you think an ILADS doctor would give me antibiotics based on symptoms.
Barely moving my feet with Rollator..
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
If you haven't had an ILADS dr. test you, you can't say really say it's been negative. The criteria for a hospital W. blot lyme test or a ELISA is hard to get. An ILADS guy will find it lyme's involved. No one else will.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- An ILADS educated doctor will not give you antibiotics upon request.
An ILADS educated doctor WILL, however, ASSESS you for lyme and other possible tick borne infections and then proceed accordingly with suggestions.
Assessment involves both looking at lab testing and clinical symptoms, history, presentation, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You say that soon you "will start a 6wk regiment of IV nutriment." (end quote)
That could cost a fortune and not get you very far if lyme is in the picture. I would put all my money into diagnostics for now . . . work ONLY with an ILADS educated LLMD or LL ND for assessment before proceeding with just support therapy that won't do much if lyme is present.
Support methods matter very much but are not at all going to do anything if the CAUSE is not identified and addressed at the same time.
I spend thousands of dollars and many years on support methods that did very little for me because the cause had not been identified or addressed.
Get a proper assessment with an ILADS educated LLMD or LL ND first. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- In the meantime, there are things you can do for yourself, though, after making an appointment with an ILADS educated LLMD or LL ND.
I wish I had known to address all this much sooner than I figured it out:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You posted this on Jan. 10:
"Have any of you had IV treatment for suppressed immune system.?A concoction of vitamins via IV. It would be done, once a week for 6 weeks." (end quote)
I cannot strongly enough suggest that you NOT have any doctor do anything that will affect immune function UNLESS they are ILADS educated and fully LL and TBD literate.
Lyme really "flips" immune function in ways that other doctors have no clue about. And their suggestions can just destroy someone with lyme that is not being properly addressed.
There are some nutritional supplements that can be very bad for someone if they have lyme (such as 3 of the amino acids - see note below). -
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Keebler
Honored Contributor (25K+ posts)
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posted
- Caution: Aspartate; Glutamine; and Phenylalanine
Each of these can cause far too much nervous system and adrenal system stimulation for many who deal with lyme.
This information is especially for those with any degree of:
it is best to avoid these three particular amino acids (other than in normal doses from food or maybe in a balanced formula with other amino acids & other nutrients, but not above the average daily dose.
Even at that, some people need to avoid excess foods that contain one or both of those as they can be too stimulating for the brain when it's already overstimulated from neuro-toxicity issues.
Specific Detail here, especially about Glutamate / Glutamine (which some do okay with but others may really react badly):
Topic: Amino Acid Information Link -
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droid1226
Frequent Contributor (1K+ posts)
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posted
I've never heard anyone talk positively about nutrition IV's long term. At best, they seem to last a day or two. They did nothing at all for me.
I'd use that money towards an ILADS dr. or if you can't afford that, you can get oral antibiotics online without a script.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just getting getting to the appt., waiting in the waiting room, getting the IV needle put in, enduring that, getting home . . . all that can TAX immune and adrenal function.
Sure wore me out with I did this. Thousands of dollars down the drain. And it was torture. Not once did the doctor suggest lyme might be the reason but when the IV supplements failed, told me I must be faking it.
Don't mess around with anyone who is not lyme literate. Even if not lyme, find out what the underlying causes are, do not just treat the result of a yet-undetermined diagnosis.
And, there are many things with diet that can help while all this is sorted out. Nutrients are best coming from food from the earth. Not from a plastic bag of fluid. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you all for advice.....This doctor I am seeing go for ILADS certificate ....I may have to hit the bullet since my nutriment is scheduled for this Monday morning ...unless I give a white lie and tell her I don't have a ride since I can no longer drive.
I will call the ILADS doctor and go on cancellation list, beg ti see him since I am getting worse....
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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Keebler
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posted
- 1. You do not need to lie about any appointment or procedure cancellation if you are not sure it's right for you.
There is never a need to lie. Just be honest. Say that you are not comfortable with the way you are feeling and have determined that this may not be good for you at this particular time. Not up to it. And that would be the truth. You don't have to explain how "not up to it."
If you are to cancel, try to call their service over the weekend and again the first thing Monday morning.
See if you have their cancellation policy in the literature from their office or on their website.
2. If you go ahead with Monday's IV, be sure they are not going to add excitatory substances such as L-Glutamine, etc. in that note above.
They usually mix it beforehand. Ask for a written or typed hand-out with exactly what is in it and the amounts. If they can't do that in advance, even if there, I would not do it.
Still, as long as they don't try to zoom you to the moon, it may be okay. You want NOTHING that will "boost" anything. Be very clear on that matter. Nothing to "boost" - absolutely nothing.
Do take in support nourishment, though.
Some MAGNESIUM in that might be very nice. Perhaps some TAURINE, too. They should know the amounts.
Not too much of the excitatory B's.
REST afterward. As much of the day as possible.
I don't understand some of the other things you say such as " This doctor I am seeing go for ILADS certificate" (end quote)
Not sure what that means. There is no official certification, however, there is an ILADS Physician Training program. Be sure they have completed that - and stay current with the conferences, articles and books by the members.
Good luck. -
[ 01-19-2014, 02:08 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
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posted
Hi Teri,
Have you got the name of a good LLMD from a support group in your area? Or a few fellow lyme patients with similar symptoms as you?
Yes, phoning every week and asking if any cancellations are available is a great idea
Also, if you could express the urgency of your situation.
In the meantime, is the IV nutrition covered by insurance, and is it for nutrition to help supplement your diet? Ie: to balance deficiencies in vitamins and minerals?
If so, then I would still continue with it as long as it doesn't have the excitory things in it that Keebler mentioned.
If it is the Meyers cocktails or is to stimulate your immune system...well I tried those myself and paid out of pocket and they were a waste towards helping me with lyme.
However, if it is IVIG or IV glutathione and is covered by insurance, and is done by an MD, I personally would do this.
When you say your immune system is down, I am thinking immunoglobbins. And if you went to a big hospital I am thinking maybe they recommended IVIG?
You need to do what you can do until you can get in to see an LLMD.
An LL will do an honest assessment of your symptoms and symptom history. And depending on the severity of your symptoms, will get you on a protocol right away. One that is best for your type of situation.
Praying for you Teri Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thank you all. I just did cancellation. Keebler I will call again Monday morning again.
The doctor had not finished her training .....as told.
I found a Certified ILADS in NH...(: Calling Monday for appt...explaining urgency ...I will have my name on cancellation list if needed.
I will see a nutrionest to find a right balance if real food.
Appreciate feed back.....
Teri the snail .
-------------------- Teri Posts: 63 | From Hampton Nh | Registered: Nov 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- A note about the difference in a dietician, nutritionist, etc.
I suggest consulting a ND instead, a naturopathic doctor. And if you can find one who is ILADS educated and LL, all the better. Still, IMO, all NDs and acupuncturists have always had better expertise regarding nutrition.
So many dieticians are stuck in that old, drink your milk (and other old) thought patterns. They are stuck on the food pyramid. Some may be more enlightened but they are bound by certain constraints and will not be able to advise you beyond basic vitamins if you have supplement questions.
Nutritionists can vary. From what I can tell, they may be more up to date.
However, NDs and those trained in that area of medicine have a great deal of education in nutrition and they also know which supplements are best . . . one who would be LL would know more specifically.
You could ask at the LLMD's office where you hope to be soon, ask them now if they can suggest someone to help in that regard.
Also ask your area lyme support groups.
There are a couple good different lyme "cook" or "diet" books but I just caution you not to think of this in a diet as restrictions but a food plan for all kind of fabulous flavors with healthful foods from nature to you cells. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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over 50 reader reviews, a near perfect composite 5 star rating. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Agree with Greta about how some IVs, if covered by insurance can be of help. They may cover for certain vitamins IF you are truly deficient in those.
There may be other things that, if covered, would be helpful. It's just that it's best to have a LLMD consulted on that first, if possible - or at least figure out if it will be a good support or more like rocket fuel to you. Those who have lyme so very often do not respond as the typical patient with many treatments. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was recently diagnosed with Lyme in Oct 2013 till then for6 years I have been diagnosed with MS. With no hope in sight I Found the site of Dr Wahls an MS sufferer, she cured her self so that gave me hope. It's all about nutrition through food. I'm now hoping that my heavy amoxyvinin dose and hyperbaric treatment will help. Nothing yet though and I've had a major setback slip and fall . I fractured my shoulder and have intense muscle spasms in my back. How do you fight confections? Just wondering.
Posts: 5 | From New Hampshire | Registered: Jan 2014
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posted
yes, she took minocycline and she also used some sort of electo mag. treatment with a physical therapist, extensively.
Posts: 803 | From USA | Registered: Oct 2013
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