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Posted 3/10/2010 1:19 AM (GMT 0)
My Lyme started in June 2009 with flu like symptoms, high fever, chills, lower back pain and night sweats.     I was hospitalized in July and tested positive for Lyme.   I've completed doxycyline, amoxicillin and IV-Rocephin treatments.    I'm still suffering with brain fog, and severe numbness in my face, arms, hands, legs, feet, chest and lower back.      I have a radiating electric feeling in my lower back, almost as if adrenalin is dripping onto a nerve which stimulates or pulses the numbness throughout my body.

I've had MRI's of my brain and spine which look normal, however my lumbar puncture oliglocinal bands seem to indicate possible MS.   I was taking Gabapentin to manage the numbness until it gradually became less and less effective.    I have weened myself off the Gabapentin so I could determine if my condition is worsening.    I have been working with an infectious disease doctor and nuerologist and plan on scheduling an appointment with a local LLMD here in CT.

I am curious to see what others in this forum are experiencing with lyme related neuropathy (Numbness).

Grateful for your comments.

Posted 3/10/2010 2:06 AM (GMT 0)
Hi,

First, I'd recommend getting your Vitamin D level checked. Much research shows that MS is linked to Vitamin D deficiency. If you are low, make sure you suppliment with the Vitamin D3 form (cholecalciferol) instead of the Vitamin D2 form (ergocalciferol), because the D3 form is more effective.

Also, make sure to get your Vitamin B12 and Folic Acid levels checked. Deficiency of either one can cause nerve damage, numbness, etc. On the B12, if your level is below 400, then a supplement is advisable (even though the normal range is 200-600; some other countries consider anything below 500 to be too low).

I have experienced a lot of leg pain with my Lyme, and it follows more of a nerve pain pattern than a joint pain pattern, though it can sometimes center on a particular joint at times. Recently, I have been experiencing a lot of tingling in my feet and legs. This tingling started last year (prior to starting Doxycycline), and I attribute it to tapering off of another antibiotic (Ceftazadime). I find taking a particular homeopathic remedy helpful in reducing the severity of the pain and tingling - this remedy is called Causticum and I purchase it at a local health food store. I typically take one or two doses of the pellets and that is enough to combat the pain and tingling for a day or two...with no side-effects.

There is a machine called the ReBuilder (I have no finanacial affiliation with this machine or the company that makes it) that is supposed to restore proper function to the nerves. It is an FDA-approved device for the treatment of peripheral neuropathy and might be a non-drug option to look in to (ask your doctors about it).

Good luck,
Posted 3/10/2010 2:33 AM (GMT 0)
Thanks for the respose. I have tested low for vitamin D and have been taking both D and B complex.
I was hoping that my mind would sharpen up a bit after stopping the gabapentin.

I will schedule an appointment with a highly recommended LLMD this month to determine next steps.
Not really interested in doing long term antibiotics.

I will consider your recomendations.

Thanks!
Posted 3/10/2010 4:19 AM (GMT 0)
So sorry you are having such a hard time. I don't really have answers for you but it is good you are getting in with an LLMD. If it is the one I am thinking that doc does link ms and Lyme so you will be in great hands. But, most LLMD's do treat with long term antibiotics. That is how they get us well or atleast functioning. Hoping you are not disappointed when you see the doc. Llmd's are expensive and do treat with abx. I just wanted to give you a heads up. I really hope you feel better soon. I experience numbness in my face a lot, toes and tingling in my legs. Often feels like my legs are falling asleep. My symptoms of numbness have improved on long term antibiotics. I do have a friend who was diagnosed with ms last summer. She won't see a Lyme doc and is treating her ms naturally. She takes a lot of herbs not exactly sure which ones, but she has been feeling really well. I don't think there is a perfect answer. Everyone just has to figure out what they are comfortable with. Think you should see this doc and atleast get his/her opinion.
Posted 3/10/2010 4:46 AM (GMT 0)
The way I knew it was in my nervous system was lyme menengitis, but looking back there are other symptoms. I've felt a lot better since being on antibiotics, but I tolorate them well. I'm in CT too, if you are going to Wilton, I see the same guy. He is great and the quality of my life is better. By here is an antifungal med is combined with moxitag that gets 10% into brain, whereas typical iv antibiotics get in 2%... I hope that means it will be more effective for people with neuro symptoms.

Anyways I have numbness on the tops of my feet, though more on the right. But I also had a hernitated disc and spinal surgery, so I don't know what to attribute it to. I also had a big area on my arm that was supersensitive (no rash) for a few weeks. Its numb on the surface.
Posted 3/10/2010 5:19 AM (GMT 0)
ct girl
can you email me your doctor in connet. name number and town. I am looking for someone around new haven fr my sister
Posted 3/10/2010 5:29 AM (GMT 0)
th neuropathy thing woud be not being able to put your feet on the floor in the morning. does that also include burning pain in your feet while lying down?

Is neuropathy pain or NUMB and NO pain?

Either way if I didn't ake roxy docone I wouldn not be able to move my hips out of a chair or put my feet on to the floor .

everything for me otherwise happens only on right side. and it seems to be almost lymph ctivated when the nubmness and pain starts up in right side of my face ear and neck.. have you ever heard of lymes induced polymyalgia rhumatica.

this is so far gona and out of control I really wonder what it will take to get it back after so many years . what about transer factor or straight up colosterum in the bottle. has nyone ever tried that.I have and it makes me feel strong but it is havd to get colosturum. I for get the dairy I was buying it from a few years ago that sends it overnight
frozen? also PORCINE glandulars also expensive have helped me in past but now I am just on Roxy and also down to 10 mg prednisone after being on 20 mg for 2 yrs. I don't know if I will ever get off of it and I do know if I popped 40mg rightnow all this swelling would go down.

The one thing that has taken away my brain fog fo a big 48 hours was heavy metal IV detox last week. I couldn't believe how happy and open my lungs were and my brain was really a brein. I am gonna do it again tomorrow to see how it goes. I found out that I shoud be drinking chorella everyday to help pull this stuff out so now I am doing that.

this is so out of hand. I really feel for you Better Health and love your affirming name. the vitamin D to tell you the truth I do not know ONE person that is NOT vitamin D defficient and not all with lyme. maybe the chem trails is causing it but EVERYONE IS. ask around. ask anyone you know the next time they geta blood test to check their vitamin D. I wonder how many kids are vitamin D defficient. I think this is another huge red flag being ignored in the medical community
Posted 3/10/2010 5:52 AM (GMT 0)
Hi betterhealth,

Have you ever been tested for Babesia? The symptoms you listed above are symptoms of Babesia and it looks like you have not been treated for it.

Also, if noone has mentioned this yet, detoxing helps alot with brain fog, etc. You may want to try that out.

Posted 3/10/2010 2:35 PM (GMT 0)
Bucci,

The feet pain thing can be from Bartonella (I think even more so than Lyme).

Peripheral Neuropathy is nerve dysfunction in the extremities (arms/hands, legs/feet). It can be accompanied by tingling, numbness, etc., but is usually quite painful. See http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm for more info...
Posted 3/11/2010 12:28 AM (GMT 0)
I have been tested for co-infections and none have come back positive. I experience no pain with the numbness, it is mostly a distraction especially in my eyes and face. The unusual feelings radiating from my lower back make me feel ill but I would also not describe this as pain either. I'm starting to experience more difficulty walking and my hands become extremely fatigued late in the day. I will see the new doctor this month and will return to the antibiotics if thats what is recomended.

I appreciate all of the responses.

Thank You!
Posted 3/11/2010 1:49 AM (GMT 0)
Just so you know, you can have a co-infection and not test positive. The symptoms you mentioned above....high fever, chills and night sweats are all symtoms of Babesia. If you indeed have it and do not treat it first, your chances of getting better are slim.

Let us know what doctor says.
Posted 3/11/2010 1:52 AM (GMT 0)
Btw, I'm not doctor but just want you to look into things so that nothing is missed.
Posted 3/11/2010 2:35 AM (GMT 0)
CajunGrl, Thanks!
I live in CT and you would think my doctors would be well versed in Lyme Disease, however I'm in the same boat as everyone else searching for the right doctor to help me. I felt like I was improving on the IV-Rocephin but my infectous disease doctor had my pic line pulled after 30 days. My symptoms got worse almost immediatly after stopping that treatment. My neurologist says that he thinks that I'm somewhere between chronic lyme and ms. He recommended doing a 5-day treatment of IVig Intravenous immunoglobulin. I am also reading up Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).

I know that this all started for me last june with lyme, but have i now acquired something else? I'm very confused... lyme, co-infections, ms?

Hope the new doctor can put me on the right path.
Posted 3/11/2010 2:46 AM (GMT 0)
Sometimes Lyme causes other things to happen. Many of us have MS, fibro, and auto immune symptoms. They're still not sure what causes that to happen. In my opinion and from what I've read, I think that our bodies "try" to attack the bacteria but the bateria are burried in our tissue, bones and joints so what it really does is causes misfiring and inflammation because it cannot get to the bacteria.
Posted 5/14/2010 8:36 PM (GMT 0)
CTgirl can you send me the doctor in Wilton? thanks
Posted 5/14/2010 9:34 PM (GMT 0)
Betterhealth,
I know exactly what your talking about. I get that numbness too. On my right side, my face feels like its vibrating, also in my legs,
was once my left arm, this time both arms felt numb and tingly. I also had the tingling as if my legs
were asleep and it became difficult to walk. And a weird lower back thing too. I too have no pain. Just weakness. Bad fatigue and
nausea too.
As for the vitamin D thing. I too am D deficient. My number was only 25. Just got it up to 27 this year. Big woop.
I ordered some Vit D3 liquid. Should get it soon. Hope it helps with the nerves. Also started B12, Magnesium Citrate,
along with the homeopathy and herbs. My nerves have calmed down quite a bit. Was having twitching also.
Very disturbing to feel you are losing control of your own body.
Glad to say, everything has calmed down with my treatments in the past 3 weeks. I was doubtfull it would be strong enough for these
strong symptoms, but it is working.
Hang in there, you just have to find the right stuff to take to help it. People in this forum really know their stuff. I am impressed.
Posted 5/14/2010 9:34 PM (GMT 0)
CTNYCJMG,

I'm seeing Doctor C. in NY and his office is pretty close to Wilton. If you are interested let me know and I will email you his contact information.
Posted 5/14/2010 9:53 PM (GMT 0)
Hi Kodak,

I have the muscle twitching too and my numbness remains very intense. I have been on oral abx for 5 weeks now and have been experiencing a very strong herx reaction this past week. I have tried the detox baths, but nothing seems to help. Hopefully things will start to improve soon.

What are you doing for treatments now?

Hope things continue to improve for you.
Posted 5/15/2010 2:37 AM (GMT 0)
betterhealth, have you considered, or are you interested in possibly having natural treatments like Deejavu, Cindy lou hoo and myself have had at the Hansa Center?

Gary

*Clarification--Deejavu did not get treatments AT the Hansa Center, however she did do the Jernigan protocol (and got better) which is what they put you on while you are at the Hansa Center. Thought I should add this for clarification for those who aren't aware of this.

Post Edited (GWB) : 5/15/2010 8:00:23 AM (GMT-6)

Posted 5/15/2010 1:53 PM (GMT 0)
Hi Gary,

I have been paying very close attention to all of the posts regarding natural treatments and the Hansa Center. I am interested, however I've decided to first follow the advice of my LLMD and see if the high dose abx can cure me. If I don't see any significant improvement in 3-6 months time, I will consider moving to a natural protocol as an alternative. Does this sound like the typical treatment progression that most people follow? Hit it hard with the abx first and then switch to natural. What was your experience? How are you feeling now?

I appreciate your comments.
Posted 5/15/2010 2:45 PM (GMT 0)
I had a lot of the neural symptoms you described. I did not test positive for Babesia, but my llmd treated me for it as he was addressing the symptoms rather than just the test result. I have made a very good recovery with antibiotics, supplements and a fair amount of determination! I hope you have similar success with your new doctor.
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