I got this situation. Hard to put in one or two sentences to explain.
We have been seeing different doctors in the past four years to find out what's wrong with my wife's health.
Lately it has mostly been neurologists because her main symptoms appear to be neurological: balance, gait difficulty, confusion, short term memory loss, and other MS-like symptoms. She rarely complains about "pain" other than occasional "Charlie Horse" cramp on her legs.
Prior to the time we found a LLMD, she was tested for Lupus, Syphilis, and autoimmune diseases including MS. They ruled out pretty much all of them.
Her neurologist does not think she suffers from ALS either.
Based on her family medical history (her mother and her brother), she was then diagnosed to have this neurological condition called Hereditary Spastic Paraparesis (HSP). They think she inhereted it from her mother.
Then she was recently confirmed by our LLMD to have Lyme disease and the treatment has just been initiated.
Now that her neurologist offers her a chance to allow a colleague of his to participate in care. He said that his colleague is specialized in infectious diseases with association to neuro symptoms. I believe he is a university associated researcher/doctor.
We do think our neurologist to be open-minded though he has his limits based on what he knows. But I assume our LLMD also has his limits, no matter how good he seems to be.
Do you think this is a good idea to "team" them?
I can think pros and cons. But I would love to hear from you if you are willing to give your opinions.
I just went to a neuro apt. yesterday and I never mentioned lyme to him.
Plus, we can't loose our LLMDs, this neuro may want to try to get more information about the LLMD to try to turn him in to the medical board. Or he may try to use this against lyme protocals saying they don't work if she doesn't get better right away.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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lymeparfait
Unregistered
posted
Definately no. You don't have time to waste with wrong treatments.
You've already been through much and you cannot expect the appropriate help from them.
They are in different camps. They are not lyme literate and need to be in a regular learning mode with lyme, attend lyme seminars and work with mostly lyme patients to truely comprehend you situation and know what treatments work for which type of patient. If lyme is only one of the thngs they work onk than they are not LLMD's.
You taking your wife to them will only possibly help them to learn, not help your wife at the time. She sounds too sick to play games.
All my neighbors now have lyme and we compare notes on Dr's and treatments. The ones who went to the neuro specialists and Infectius Disease Dr's with high credentials and PHD's, are the ones who have gotten the sickest over time, with no end in sight.
The ones who got better have gone the the LLMD's who are undercover, and unknown. And who follow proven integrative protocols for lyme. Not just IV antibiotics.
Another Big "free" tip: This will give her a kick-start!
work with a nutritionist or just ask on lymenet and get your wife on some quality liquid supplements full of vitamins, amino acids and EFA's. With good probiotics too.
This will begin her healing while you are working on finding the LLMD, before you begin the protocol, most likely antibiotics. She (and all lyme patients) is not absorbing her nutrients, most likely causing many of her neuro symptoms. It's not just lyme.
Take our advice here...and save yourself grief. I wish I heard this from someone first!
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ditto. Stick with your LLMD. You've wasted 4 years - move on to getting better and getting on with your lives.
And FWIW - she may just have inherited Lyme, so I would have her family checked by Igenex as well.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Thank you all. All make sense to me.
Posts: 822 | From midwest | Registered: Apr 2009
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lymeparfait
Unregistered
posted
Suggestions for supplements: 3 things to start with, and I suggest powder form to start for absorption. These things will help kick start her immune system healing. (they will not kill the pathogens)
amino acids, powdered: help neuro function. Try My amino PLex by MOss Nutrition
Buffered Vitamin C:powder: with calcium, magnesium and potassium...good brands are allergy REsearch Group and Nutricology.
Magnesium: powder: Try Natural Calm Plus (has mag and calcium) by Peter Gillam.
Fish oil or flax seed oil...many great products available.
There are many other impt. things to incorporate from Dr. B's guidelines, just go to the Newbie page on the top of this forum and you will find it there.
A good LLMD will know what to suggest as far as other supplements, but what I gave you above, your wife should get some immediate relief neurologically, or possibly help with sleep.
Once you start antibiotics you will also need a good probiotic. Some people here are using Progurt, check out the thread. It seems to help those with MS symptoms.
Even some good LLMD's don't have the complete picture about absorptin issues. That's why I mentin a nutritinist or a ND.
My friends who have healed and are in remission have learned about this and incorporate this in their life with great success during and after antibiotics. They had symptoms like your wife.
posted
Thank you so much, lymeparfait. You have been very helpful. I will keep this note and search for these products.
Posts: 822 | From midwest | Registered: Apr 2009
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