posted
My wife and I have both been diagnosed with Lyme Disease. We were fortunate enough to be directed toward a LLD. My wife is close to being two months in to treatment with the Doctor.
Her symptoms have been hand numbness, foot numbness, leg weakness. She is almost incapable of walking. She can walk short distances with the use of a cane. Since being treated she has progressively gotten worse.
This journey has been as trying mentally as physically. She has questioned me numerous times "Am I going to get better?"
I was just curious if there are any fellow Lyme victims with a similar story, and if there is anything that we could find useful in her road to recovery.
.................................................
Breaking this up for easier reading for many here.
I am out the door now, but the answer to your wife's question is yes, she does have a chance to get better, providing she does treatment that is right for her. We are all different in how we respond to treatments.
Your LLMD will help with that, also people here are wonderfully capable of providing you with excellent info regarding care and "making it through." Thanks for being here for her.
[ 03-10-2013, 04:46 PM: Message edited by: Robin123 ]
Posts: 7 | From Central Pa. | Registered: Mar 2013
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posted
Welcome! I'll send this over to Medical Questions for help. I hope you get some good advice!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi Miller.
All I can say is that people many times get worse before getting better. They feel worse because of herxing - the die-off of lyme, which is very toxic.
But still, I would call the LLMD and mention that she is getting worse after two months of treatment, and see what the doctor says.
There are herbal protocals that many people take, along with the antibiotics that help. For example the Buhner protocal: www.buhnerhealinglyme.com. These herbs can help the antibiotics to work better and the body deal with neurotoxins.
With herxing, taking vitamin C and drinking lots of water can help.
Hopefully, someone else can help you more than I can.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
Miller-you and your wife are in my thoughts.
I would call your llmd to see if he or she can advise you. I had a horrible time(and still do) detoxing these horrid neurotoxins. Detox may be something to ask about also. Drink LOTS of lemon water.
Also, have either of you been tested for co-infections. I got worse the first few months of treatment also. I never tested positive for co-infections but had huge improvements once my doctor diagnosed me based on clinical symptoms and began receiving treatment.
It is common to feel worse and have a worsening of symptoms prior to feeling better. But still contact your dr to be sure.
This can be a frustrating road but yes, you can both get better!!
Keep posting and asking questions-the people on this board are amazing and have helped me through many a challenging day.
You and she will make improvements with proper treatment. Hang in there
Posts: 238 | From new england | Registered: Feb 2013
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We were both tested for co-infections. My wife is positive for about everything a tick can carry.
We are headed back to the Doctor today. We will be sure to ask if this is very commonly seen by him. He initially told my wife that she would get worse before she gets better. We just weren't expecting it to take this long. I am hoping and praying that she will soon reach the turning point.
She has been trying to stay very hydrated with water. We've also used a friends sauna. We recently ordered one. I am hoping that regular use will help her in detoxing and general wellnes.
Thank you so much for all the hope and advice!!
Posts: 7 | From Central Pa. | Registered: Mar 2013
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Hi Miller, I did have a particularly bad stretch of icy numbness in extremities that made it even harder to walk....and this can be one of the neurological responses to the illness.
I don't know the details of your doctor's treatment , but there was some improvement in these sort of symptoms for me after I increased my magnesium levels (find a well-absorbed supplement because magnesium can e tricky). Red cell magnesium is often low in those with Lyme. At the same time, I also took an R Lipoic Acid supplement for a period and felt that this also may have helped.....but it is hard to be sure about cause and effect!
The sauna is a great idea if your wife can tolerate it....she should make sure her mineral levels are replaced afterwards. Good luck with both your states of health.
Posts: 1647 | From UK | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
u got some good info above
i dont have the same story as you-i have been dealing with this 30 yrs and the first 15 was not dx
recently a new sx for me has been inability to walk do to weak legs and a crampy feeling
in trying to figure it out i am reading about mitochondria problems and also bartonella. a regular doc said cat scartch fever can give you sore/weak shins and that is where the pain is that stops me
it is intermittent tho and i cant figure out what helps or hurts
i have been getting a lot of testng and will keep coming back to this thread if i have info
in your case...if she is positive for many coinfections it think it is amazing she is even out of bed...keep reading here...and be sure you llmd is really a good one. but 2 months is too soon for someone with many infections
good luck to both of you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You don't say how long you have been sick. People who were tickbitten and untreated for considerable time will need longer to see improvement.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I cannot thank everyone enough for all the thoughts and input.
We just visited our Doc last night. He gave her some simple exercises to do to try to prevent anymore muscle loss. He also ordered an MRI, just to rule out any other causes. He has really been pummeling her with abx. He told me he is trying to stabilize her. My wife told me that her B-12 levels were good.
She has had symptoms for probably close to a year. It started with tingling in her fingers and toes. It progressed into hand numbness and foot numbness. Now her legs don't seem to want to work. Around the New Year, she was dealing with a lot of stress at work, and had a number of other serious stressors in our personal lives at the same time. This seemed to be the straw that broke the camel's back. The stress and our Family Doc saying they couldn't find anything wrong with her. Our family Doc was trying to treat her with antidepressants. I feel that all of this culminated into a perfect storm to trigger her decline in health.
I am just so thankful that we had friends and family point us in the direction of a LLD. I don't even care to think of the shape she would be in if we hadn't.
Neither my wife or I had any idea of the road that lay ahead of us. We are slowly coming to grips with the grim realities of TBD. There is so much to learn about lyme and the coinfections.
Thanks again everyone!
Posts: 7 | From Central Pa. | Registered: Mar 2013
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posted
I had a lot of neuro and balance problems when I first got sick. It got to the point that walking was really difficult (I could hardly feel my feet, so I'd have to actually be looking at them when I was walking). And I failed the in office neuro exam HARD.
But for me, some years later, the only symptom I can't seem to clear entirely is the joint pain. So it is entirely possible that after some treatment, she'll get that function back.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i just want to say you are a WONDERFUL husband
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Sure your llmd mentioned this but be sure your wife is on a high quality probiotic to protect her gut and replenish the good bacteria that those antibiotics kill.
Posts: 238 | From new england | Registered: Feb 2013
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With this disease, there is nothing better than an educated patient. For one thing, it makes you able to evauate the treatment your doctor is giving you. I wasted 2 years with a doctor who was giving me lousy treatment. The way I found out it was lousy was by reading the Burrascano Guidelines. Then, I attended a lyme conference and heard Burrascano speak. Then, I had no doubt I had to change doctors.
It was the best decision I ever made. I switched to a doctor who followed the Burrascano Guidelines and in 13 months I was rid of all of my diseases! That was 8 years ago.
The doc is the key to getting rid of this disease. Can't emphasize that enough. Lots of doctors treat lyme disease, but only a few know enough to cure it for a person. You have to find one of those few. I know a few of them.
On page 28 it tells you that magnesium is a required supplement for all lyme patients. Burrascano recommends Mag-Tab SR by Niche which can be ordered at the WalMart pharmacy. It will come in the next day.
See what Burrascano says about it:
"6. MAGNESIUM (required)
Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (�Mag-tab SR�, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on �cal-mag�, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary."
As stated above, you cannot rely on the regular blood test to find out if you are magnesium deficient. See page 6. Every lyme patient is deficient and needs mag.
You can also try sublingual (under the tongue) vitamin B12. Buy it at a health food store. That can help to get rid of nerve symptoms like the tingling.
You will also see Methyl B12 recommended for nervous system symptoms on page 29. You might want to ask your doctor to try these injections. They could make a world of difference for your wife! I hope so.
As you will see when you read the Guidelines, treatment is a 4-pronged approach:
high dose combinations of antibiotics supplements and herbs anti-yeast diet non-aerobic exercise (weight lifting for one hour every other day)
It takes all 4 prongs to get rid of this horrendous disease.
Keep asking questions and keep reading. We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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