posted
For the past 10 yrs.I have had classic lyme symptoms- fatigue, fevers, joint, muscle pain ect.
In the last year I have noticed bone pain, random twitching all over my body at random times, poor cognition, word finding difficulties, vision disturbances, numbness in extremities, muscle atrophy,even some loss of bladder control, my heart flip flops all the time, The list of new symptoms goes on...
The things that concern me the most are the muscle atrophy, random twitches and that I am dropping stuff all the time, my grip and dexterity have diminished...
I've read that most of these new symptoms are Neuro-lyme - but I don't want to leave any stone un-turned on my road to recovery- Your thoughts on this would be greatly appreciated
-------------------- Hoping for Hope Lyme, Cfids, Hormone imbalance, hypo-thyroid, immune deficiency Posts: 44 | From North Hollywood | Registered: Jan 2014
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
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)
Member # 12673
posted
- I found many links, matching your name here and your posted career on the web. Of course, it may not be your real name.
If this is your real name, as you have posted so much personal detail in your profile, this could put your privacy - and career - at risk.
If this is your real name, I don't know how to change that but at least delete the exact location and personal detail in your profile.
then capture all replies, copy & paste to a work file and then delete and register with a different web name.
I know it's not right, but you can't run the risk of insurance and professional career "minders" knowing your health issues. It could affect your job offers, etc.
DO talk to those in your area support groups. there are ILADS educated LLMD and LL NDs in your state. And this group is based in your state, a great resource, connect to their support on-line:
Please do not post your real name -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope you find the connections you need. This can be very rough and tumble so be sure to stop and breathe and take care of yourself. This can, YOU can, get better. Really.
A few more thoughts that can help you as you wad through the assessment process, regardless of what's going on: avoid all food additives, consider avoiding all gluten -
- and you could be deficient in magnesium. Many with lyme are but then so are many folks, in general. Magnesium deficiency can cause muscle twitching.
Magnesium can help reduce inflammation and help with comfort level.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
Additives, especially artificial sweeteners, can cause some of the symptoms you describe and make them worse for those with any kind of neurological condition (such as lyme)
Regardless of who you work with, if they are ILADS educated, as is essential, they should have you on liver support. MAGNESIUM detail is also here:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
"...dropping stuff all the time, my grip and dexterity have diminished..." This is called peripheral neuropathy.
I have this too, and it improved when I began taking Gotu Kola. I was taking Gotu Kola to try to improve my cognitive issues, and then I noticed that I wasn't fumbling pills as much.
This always happens...I start a supplement to try to alleviate a symptom and when I'm watching to see what happens, a different symptom improves.
When I began taking Berberine, a number of symptoms improved, including pain, reflux, and bladder control.
Some of your symptoms look like low magnesium: muscle twitching cardiac irregularities
You mentioned that you're taking various supplements including fish oil. I've found out that a better quality fish oil makes a big difference in the results you get. Which kind are you taking?
Your list of symptoms and meds and supplements are spread over several posts, and it's taking some work to try to get the whole picture.
Many of your problems sound similar to what I've gone through. You mentioned physical pain. Where do you have pain, and what have you found so far that helps?
Bone pain may be due to low Vitamin D. You can test for this by pressing very hard on the tibia bone above the ankle, with your knuckle. If your doctor does this, he won't hold back, and the pain may be severe.
Your doc can test for your Vitamin D level. If it's low, he may prescribe large doses to bring it up, and then maintenance doses as needed.
After reading many posts here, I decided to take Vitamin D3, 5000 units daily. You need Vitamin D for your body to use magnesium properly.
Also, if your Vitamin D level is in the upper ranges, you're less likely to get colds and influenza. I haven't gotten colds or bronchitis or influenza in years!
I have a number of suggestions for pain, but I'd need to know everything else you're taking.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks to Carol for mentioning these. More detail for you to save to your study file:
posted
Thank you so much everyone for your kind, informative posts. I am looking in to all this and will get back to you !
-------------------- Hoping for Hope Lyme, Cfids, Hormone imbalance, hypo-thyroid, immune deficiency Posts: 44 | From North Hollywood | Registered: Jan 2014
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posted
Thank you so much everyone for your kind, informative posts. I am looking in to all this and will get back to you !
-------------------- Hoping for Hope Lyme, Cfids, Hormone imbalance, hypo-thyroid, immune deficiency Posts: 44 | From North Hollywood | Registered: Jan 2014
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