posted
Hi all, hope everyone's recovery is going well.
I came down with a sudden case of neurological lyme disease last year in september, no bullseye, no early symptoms, just full on slammed.
I began treatment 3 months later after a positive western blot. Fast forward with months of oral antibiotics to today, and I only have a few remaining symptoms out of the 30+ I originally had. I feel great. I no longer feel sick, which is huge.
Unfortunately, my most debilitating symptom, which is severe nerve pain and dysfunction/twitching in both legs continues to persist. It has gotten slightly better over the months, but it's hard to tell since it waxes and wanes. I'm in a state of constant pain, but there are a few random days a week where my pain levels drop significantly, while other days they might spike beyond baseline. Strangely enough, my pain is much better on weekends, even though I do more physically.
I'm at a crucial point in my treatment right now. My LLMD discussed the possibility of these symptoms being nerve damage rather than active infection. I'm still in treatment, but am also taking supplements to help with nerve repair.
My usual intuition is failing me right now. I am not sure whether continuing antibiotics or accepting this as post lyme is the right way to go. I'm hoping for some seasoned vets to chip in with what they've seen on this board or experienced themselves.
I have read stories of people finding a miracle combination of meds that helped clear issues, so I still have some hope. I also think giving IV a shot would be a good idea, since I've heard it is more effective with neurological lyme. I am seeing a different LLMD just to get an outside opinion, but wondering what you guys think in the meantime.
Posts: 6 | From USA | Registered: Jun 2014
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posted
Hi I'm happy for you in feeling better , I used to have constant tremors pain etc . It's good to hear you are going to see another LLMD .
More than likely missed a tick borne illnesses or multiple confections
Had my LLMD told me about it being nerve damage or so called post lyme and listening to him I would have not made a close to 100% recovery .
I was chronic or stage 3 when diagnosed and started treatment
I would have slipped back into the torturous hell and I would have died.
My experience with lyme and bartonella and treatment was mainly meds, supplements, etc that crossed into the blood brain barrier. And that has helped with neurological , cardiac/pulmonary, mucuskelator etc.
And pain , symptoms were 7 through 10.
Using a med that busts open the cyst form of lyme.
Detox , control yeast , control fungus, make sure to take probitics .
Keep a journal of meds ,symptoms and pain and rate them 1-10
As far as iv I was talked out of it from my 3rd LLMD, saw him immediately next day after 2nd LLMD as I was on a cancellation list , and just by luck.
The 3rd LLMD gave me the pros and cons of iv . So I chose the oral and supplements route .
Posts: 238 | From Where | Registered: Aug 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree with lostlyme.
Have you treat bartonella AND mycoplasma so far?
Mine was hardcore neurolyme also. Couldn't speak talk swallow write, tie my shoes. Got lost in my apartment. Etc etc.
Switching and tremors were a HUGE part of my list of symptoms.
Treating bartonella, while also on a course of tompiramate, helped about 70% of the twitching. Treating MYCOPLASMA took care of the rest and then some!
I am no longer on topiramate.
In fact I was like you, toyed with the idea of continuing with abx or quitting. (I was tired of playing mop-up... Where I am now is good enough, neuro lyme wise...) and stopped all abx about a month ago.
The twitching has stayed away. The only pills I take now are thyroid in the morning, and low dose naltrexone at night.
Try treating myco...you will notice within weeks if it is was the cause of your twitches. FYI, myco is found in 100% of ALS, MS and Parkinson patients. (Along with bartonella and lyme, babesia and strep (in the Parkinson patients, strep is a biggie).
Anyways, just info I found while I was searching to get better.
So glad to hear the worst of the neuro lyme is over Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
O yeah that hardcore nureo lyme there were days I could not add 1+1 , or read a child's book etc .
Forgetting family names or using wrong words , making up words .
Asking same question repeatedly like are those new , when did we get them .
Leave room and then ask those same questions again and again
Getting lost or misplaced .
But that shaking or trembling especially using a fork o boy
Posts: 238 | From Where | Registered: Aug 2012
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Drew067...
Have you considered mHBOT? It is the only treatment known to promote repair of neural tissue and release of stem cells. It gave me my life back 100% from severe neurolyme...
Nutrition is also crucial for nerve and gut healing, including lots of good fats & protein as building blocks.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Presumably you are taking a good amount of magnesium. That helps with twitches in some people, and most people, lyme or not, are low in magnesium.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I wonder the same thing! I consider myself in remission, but I have burning and numbness that waxes and wanes. Since I feel so good otherwise I guess I will just have to deal with it?
Posts: 33 | From Southern Indiana | Registered: Feb 2013
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Essential Fatty Acids and Vitamin B12 are required for nerves to heal. Make sure you have sufficient intake of both of these.
SpectraCell testing can determine cellular deficiencies of above nutrients, if you want or need proof before taking supplements...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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LostLyme and Greta, I have been diagnosed with Bartonella by my LLMD on clinical grounds. However, my doctor believes bartonella turns around fast and we only targeted it with Rifampin for about 4 months.
I did not make any noticeable gains with the rifampin unfortunately. We've stopped targeting it directly, but the Biaxin I am now taking does have action against it (who knows how much though honestly).
It's awesome to hear that treatment was able to clear your neuro pain. That gives me at least some hope that we either missed something or haven't found the most effective meds yet. How long did you end up taking antibiotics for lyme?
Greta, I haven't done a lot of research on Mycoplasma, but maybe it's something to look at. My current doctor believes in limited testing so who knows what we've missed. When did you stop treating lyme?
In any case, I'm going to be seeing a supposedly world renowned lyme doc in California at the end of August. I just feel like I need a fresh look at my case, and I want to at least try testing for other problems too.
Posts: 6 | From USA | Registered: Jun 2014
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Thank you so much for the link. I was skeptical about mhBOT and more or less dismissed it altogether. reading over your thread definitely raised lots of questions, and I am going to research it a bit more.
Since it seems like it would be pretty hard to access one, it might be a last resort option for me, although I would absolutely try it if I could get my hands on one. Unfortunately, I only have so much time and money to dedicate to a limited number of treatments at one time.
I might bring it up with my LLMD at my next visit though.
Posts: 6 | From USA | Registered: Jun 2014
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I am taking magnesium but it makes no difference. I know it has helped people, but I believe there are lots of reasons muscles twitch. In my case, it seems to be either nerve damage or effects from active disease. I'm glad I gave it a shot though.
Posts: 6 | From USA | Registered: Jun 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
OK, just thought I would mention it. Some people take one magnesium pill a day and think that will work. But it goes in and out fast, so it needs to be taken multiple times a day. I need it about every four hours, or my muscles start cramping up. Mostly leg and foot, but sometimes hand.
The person that suggested B vitamins is right also.
However, none of these supplements alone will work in the absence of the right antibiotic treatment.
Posts: 2888 | From USA | Registered: Mar 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Drew967...
Don't be surprised if your LLMD is not well informed about mHBOT.
A good resource is "The Oxygen Revolution" by Dr. Paul Harch (or visit his website at hbot.com).
For example, here are some of his before and after mHBOT SPECT scans of patients with different chronic brain conditions (download PDF from icon at bottom of page): http://www.hbot.com/SPECT-imaging-PDF
I also help people find ways to acquire chambers more affordably and/or find others to share use/expenses cooperatively (no, I am not a sales rep and I do not take compensation)...so I can send you more info if you decide to pursue this avenue.
Posts: 1880 | From Earth | Registered: Jul 2013
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