Numbness and Tingling?

[Time_of_my_Life]

In the last few weeks I've noticed that my left leg and foot from the knee down is numb and tingly.  It hurts to even touch it… especially the top of my foot.  I also notice the top of my head also feels numb and tingly along with my back.  I looked up the symptoms and it seems to be associated with some kind of Neuropathy?  Is this linked to RA or Lymes? Has anyone else experienced this?  Thanks in advance for any insight you can offer me.

Lori

[Maz]

[user=212]Time_of_my_Life[/user] wrote:

In the last few weeks I've noticed that my left leg and foot from the knee down is numb and tingly.  It hurts to even touch it… especially the top of my foot.  I also notice the top of my head also feels numb and tingly along with my back.  I looked up the symptoms and it seems to be associated with some kind of Neuropathy?  Is this linked to RA or Lymes? Has anyone else experienced this? 

 

Hi Lori,

No, not usually associated with RA, but very common to have neuro symptoms with Lyme that are very MS-like in presentation.

Did a quick search and pulled up this article by a well-known, highly respected LLMD in MA. There are many informative sites out there with this type of info on Lyme symptoms, but this one describes what you're experiencing:

http://www.canlyme.com/fibrocfslyme.html

“Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia), intermittent swelling and pain of one or a few joints, “bull's-eye” rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias (including numbness, tingling, crawling and itching sensations), as well as cognitive difficulties and mood changes.”

Of course, the symptoms for Lyme and coinfections aren't limited to the above, as it mimics everything under the sun, but these neuroborreliosis symptoms are very well-known ones.

Hope that helps, Lori.

Peace, Maz

[Time_of_my_Life]

Thank you Maz 🙂

Wow… those symptoms describe mine exactly.  I have that crawling, itchy feeling lately almost nonstop.  It's driving me crazy!  Along with all the other symptoms which I have had for some time.

Although I was only positive for both 41 bands on my IgeneX testing; I am coming to the conclusion that I need to stop wondering if I have Lymes and see a LLMD.  I have been stalling due to the fact that they don't take insurance and really hoping that I'm not going to go broke by seeking out help. 😕

It has been almost 5 years since I was diagnosed with RA with my one swollen “running” knee.  I have not had any swelling or “flares” since, although I do experience a malaise flu-like feeling frequently.  I have to go with my gut instinct and seek additional opinions.

Can someone help me find a knowledgeable LLMD in Midwest?  Minnesota, South Dakota, Iowa.. perhaps even farther if they are GOOD… plus what kind of expenses I can expect to have to pay.

Thank you so much Maz for all of your expert help and information.  You are a God send to all of us here on the Road Back!

Lori

[Maz]

[user=212]Time_of_my_Life[/user] wrote:

Can someone help me find a knowledgeable LLMD in Midwest?  Minnesota, South Dakota, Iowa.. perhaps even farther if they are GOOD… plus what kind of expenses I can expect to have to pay.

Hi Lori,

Sorry, but there aren't any LLMDs listed for South Dakota, but there is a healthy list for Minnesota. Will PM you this list, but would also recommend contacting the Iowa Lyme Disease Assoc as they may be able to refer you to someone in that state, too. I know of one good LLMD in Iowa, but they may have more now on their list.

PM on its way!

Peace, Maz

[PhilC]

Hi Lori,

I believe it would be helpful to do some “troubleshooting” to try to pinpoint what is causing the problem (or not causing it). Have you been taking 200 mg of minocycline twice a day since March 2008? Also, how much MSM are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Time_of_my_Life]

Phil –  Yes I have been taking the minocycline since March 2008… although the last year I have pretty much dropped it down to 100mg a day.  If I remember, I will take 100 mg/twice a day.  I take between 4000-8000 mg of MSM daily (sometimes I forget.)

I also was going to a chiropractor because of muscle and joint pain. (mostly in neck and back)  He did not help me… I only felt worse after seeing him.  I did notice the numbness along the sides of my spine when I was seeing him.  He didn't do xrays but I don't believe it is from a pinched nerve. 

Just within the last few weeks the tingling and itchiness seems to be spreading more throughout my body.  I itch just about everywhere… especially where the numbness is.

Lori

[PhilC]

Hi Lori,

What I would do, if I were in your situation, is stop taking minocycline for one week. After one week I would resume taking it, but at a dose of 100 mg MWF. Keep in mind that this is not medical advice; I am just telling you what I would do. Actually, it is more or less what I did do back in March 2009, though with doxycycline rather than minocycline. The reason I did that is because I was experiencing some strange sensations in my hands and feet that were suggestive of peripheral neuropathy.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

I thought I should add that it worked. The weird sensations in my hands and feet (especially my left foot) went away when I stopped taking doxycycline, and they did not come back when I resumed taking it MWF instead of daily.

I made up my mind to stop the doxy after I found this:
Can doxycycline cause polyneuropathy?

Initially I wasn't sure what was causing the peripheral neuropathy and was only slightly suspicious of the doxy. After reading that article I knew I couldn't ignore the possibility that it might be the culprit.

Another thought occurred to me after re-reading that article. If minocycline is responsible for your neuropathy symptoms and you continue to take it, the nerve damage may become permanent (if it's not already).

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Time_of_my_Life]

Thanks for the info Phil.   Are you still on the doxy MWF with no numbness and tingling?  So you have no permanent nerve damage?

Does anyone else have numbness and tingling side effects from taking minocycline?  I haven't heard of this mentioned before.  I will have to do some research.

I have decided to stop taking the mino for a week and see if the sensations go away.  I will resume next Saturday and try the MWF dosing. 

Lori

[PhilC]

[user=212]Time_of_my_Life[/user] wrote:

Thanks for the info Phil.   Are you still on the doxy MWF with no numbness and tingling?  So you have no permanent nerve damage?

Hi Lori,

Yes, that's correct. I am so glad that pulsed dosing has worked because I don't think I would have been able to stay on doxy if it hadn't.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Michele]

Lori,

I also had these neuropathy symptoms you are describing. They began while I was on minocycline and mostly affected my feet and lower legs.

Last February when I started a lyme treatment with a LLMD there was a short time I could barely walk because my feet hurt so much. The only antibiotic I was on then was a very small dose of Biaxin. But, after a week or so of intense symptoms, it resolved! I haven't had those neuropathy symptoms. Many other symptoms, I do still have…like fatigue, muscle, joint and rib pain…but hopefully with some good continued guidance that will resolve too!

Check all your variables and options of what may be causing this, but I just want to let you know that for me, it was lyme coinfections that caused it. I recall the LLMD checked for neuropathy in the first exam and I was losing sensation in my feet. She used a large tuning fork to submit my feet to vibrations and asked when I stopped feeling the vibration. I lost the sensation quite a bit before it actually stopped vibrating. I see doc on Tuesday. My hunch is that at least this symptom is better!!!

Michele

[Krys]

[user=1429]PhilC[/user] wrote:

The weird sensations in my hands and feet (especially my left foot) went away when I stopped taking doxycycline, and they did not come back when I resumed taking it MWF instead of daily.

I made up my mind to stop the doxy after I found this:
Can doxycycline cause polyneuropathy?

If minocycline is responsible for your neuropathy symptoms and you continue to take it, the nerve damage may become permanent (if it's not already).

Phil

Hi Phil,

I've had neuropathy for over a year now and a few days after starting Doxy (I've been on it for almost 2 weeks), the numbness in my fingers disappeared, no more creepy – crawlies, still some numbness in my face, though maybe slightly less than before. I think that the tendons in my hands are slightly less strung up, so that may have contributed to no more numbness in the fingertips.

I've read the link and I think that conclusion that minocycline is responsible for neuropathy may be a bit far fetched. I am not a doctor and not even well versed in medicine, I just think that it may be a symptom of a lot of things (some mineral deficiencies? maybe a bigger dose of antibiotic causing too much die-off and bigger amounts of neurotoxins causing nerve inflammation? Thick blood? Not enough oxygen and nutrients being supplied?)
I found it interesting that in the link you supplied, the discussion following the letter to the editor states: “In some cases intracranial hypertension seems a reasonable explanation of the symptoms…” I would interpret intracranial hypertension after taking an antibiotic as a herx reaction, an effect of the release of neurotoxins by dying bugs. It may still be dangerous if intense and does not subside on its own. I'm reading it through my own experience, though. Intracranial hypertension is part of my herx, big time (so it feels) and yet the numbness disappeared.

But it is fabulous that you've found the solution! You are still on doxy and the numbness disappeared. Congratulations!

Lori, I do hope you have contacted your AP doctor. Your symptoms ring alarm bells within my brain. I am the last person to give any advice, I only remember the comment made to me when I was taking almost daily massage for the numbness and tense muscles. I was told it is much better to feel pain than numbness as numbness may lead to dying (?necrosis) of nerves and cells. Itching can be just herx. But numbness and itching IS serious! The cells are not getting enough blood, oxygen and nutrients. Even if twitching AP helped, please contact your AP doc if you have not done so yet.

My best wishes to you,
Krys

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