CIDP (chronic inflamitory demyelinating polyneuropothy)

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georgiagirl
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   Posted 2/20/2009 12:41 PM (GMT -7)   
I think I have this along with LD. One of my first symptoms was neuropothy in my hands and feet. Also I have a delayed feeling in the movement of my hands and feet. My lips also tingle. These symptoms are 1/2 my problem. My doctors have never mentioned this. I just started to research this.
The treatments for this are IVIG, or injections,plasmapheresis, and non-steroidals like cyclosporine and methotrexate and some types of steroids ( which I know aren't good with LD.
Has anyone here been diagnosed with this as well as LD? If so how did you get your diagnosis? What tests?
I'm not sure where to go from here.  6 mos. of IV rocephin is not touching these symptoms. I will mention this to my ID doc. on mon.
Should I go see a neurologist? I have been to one but I have not had a spinal tap. Maybe I should?  confused Thanks

Razzle
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   Posted 2/20/2009 1:42 PM (GMT -7)   
Have you been tested for Vitamin B12 deficiency? Your symptoms could be due to low B12.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


georgiagirl
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   Posted 2/20/2009 2:16 PM (GMT -7)   
I get a b-12 shot every 2 weeks. My doctor sugested it. I'm not sure if I need it or not?
Thanks.  :-)

dorit
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Date Joined Nov 2008
Total Posts : 375
   Posted 2/20/2009 4:47 PM (GMT -7)   
Hi georgiagirl!

I am sad that you have theses symptoms! The deeper we dick into all this, the more connections come up with lyme as a possible trigger;I am not that familiar with CIDP but when my doc was telling me the endles chain of possibly lyme related disasters I think she told me about CIDP being the same as Guillain-Barré-Syndrom (GBS) (I understood it like this) which exists as an acute or chronic illness (then also called CIDP). She mentioned that it starts quickly with a steady increase of symtoms for a few weeks/ one month or so and then (very) slowly may get better again. And it "normally" starts in the legs/feet and goes upwards in the body (which was why she mentioned it - I had nerve pain in my legs but I think it came form my prolapsed discs).

Beside the liquor testing there should be an antibody test. Maybe its worth a try to call a good us- lab and ask them. I pray and keep my fingers crossed that it is not CIDP!! greetings, dorit

georgiagirl
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   Posted 2/22/2009 1:10 PM (GMT -7)   
Dorit, what do you mean by liquor testing? I see my doc. tomorrow. I can't wait!
Thanks

dorit
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Total Posts : 375
   Posted 2/22/2009 4:07 PM (GMT -7)   
georgiagirl-

OMG -did I translate nonsense???I am so sorry for that!! I remember this: cerebrospinal fluid (CSF) can be testet via lumbar puncture (I called it "liquor testing" -maybe translate it like this does not work in English and only means "alcohol test" or something ?!. The fluid is called "Liquor cerebrospinalis" here). With CIDP and GBS the test results show an increase of proteins in the fluid but no increase of cells; there should also be an antibody test (sereology) and also a possibility to check for decrease in conductivity of the (affected) nerves.
Hope this helps! dorit

dorit
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Date Joined Nov 2008
Total Posts : 375
   Posted 2/22/2009 4:18 PM (GMT -7)   
ha- I found something: Spinal tap and serum test for Anti-ganglioside antibodies, which are one branch of the CIDP diseases, as anti-GM1 anti-GD1a anti-GQ1b. (wikipedia) take care! dorit

bcaring
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Date Joined Feb 2006
Total Posts : 346
   Posted 2/23/2009 7:42 AM (GMT -7)   
georgiagirl,

Has your doctor done a IGM and IGG workup for Epstein Barr, Mycoplasma, Chlaymidia Pneuonomie, and HHP-6? I was very high in all of these. Because Epstein Barr is a virus I think that they might use Valtlrex or Valcyte (SP?) to treat it.

I hope some others can give us some feedback also. Let us know what your doctor says.

Good luck.
bcaring

bcaring
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Date Joined Feb 2006
Total Posts : 346
   Posted 2/23/2009 7:49 AM (GMT -7)   
I also forgot to post that I would try other things before I had a spinal tap. If you have had lyme a long time, 6 months of IV Rocephin may not be long enough. (I know it is hard to believe!) Are you taking any other antibiotics? I did not have a resolution of any symptoms until around 9 months and I was on a combination of drugs. Do you have co-infections?

IVIG can help with neuropathy and I think you can have a muscle biopsy done to show that there is neuropathy and the need for IVIG to reverse it.

I know my LLMD has sent several patients to a neurologist to get IVIG going.

Again good luck with your visit.
bcaring

dorit
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Date Joined Nov 2008
Total Posts : 375
   Posted 2/23/2009 11:55 AM (GMT -7)   
Hi bcaring!

I have some questions - could you help me?: is IVIG = Intravenous immunoglobulin? (sorry I did not found a really reliable online dictionary for med stuff), if so did you have taken those and are they save?

How are you? kind greetings!! dorit

Sulma
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Date Joined Apr 2008
Total Posts : 366
   Posted 2/23/2009 12:15 PM (GMT -7)   
georgiagirl said...
I think I have this along with LD. One of my first symptoms was neuropothy in my hands and feet.
Same here. 
 
Neuroborreliosis is first an inflammatory disease, which is a disease unto itself. Have you eliminated things from your diet one at a time to find if there's something there triggering the inflammation? Also, have you tried any herbs to treat it? Cat's Claw for one has shown significant efficacy as an anti-inflammatory agent in multiple studies.   

georgiagirl
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Date Joined Oct 2007
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   Posted 2/24/2009 9:41 AM (GMT -7)   
Hey Sulma, I am on a candida diet right now, it's not easy and i'm loosing weight, not good for me.
I was on cat's claw, sarsaparilla, chyme, resveratrol, astragalus for about 10 mos. I got tired of swallowing 56 pills a day! I did not notice a huge difference. I got tired of the cost as well.
Do you know of anything else that helps with inflimation? Certain foods? Thanks alot.

Sulma
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Date Joined Apr 2008
Total Posts : 366
   Posted 2/24/2009 7:06 PM (GMT -7)   
georgiagirl said...
Hey Sulma, I am on a candida diet right now, it's not easy and i'm loosing weight, not good for me.
I was on cat's claw, sarsaparilla, chyme, resveratrol, astragalus for about 10 mos. I got tired of swallowing 56 pills a day! I did not notice a huge difference. I got tired of the cost as well.
Do you know of anything else that helps with inflimation? Certain foods? Thanks alot.



The only supplement I've personally found to work for my inflammation is Chlorella on an empty stomach in large doses. I was taking a minimum of 2.5 grams at least two times a day. During the same time my arthritis went completely into remission. Later I stopped the chlorella, and in about 2 months or so the arthritis came back. Been back on it now about 2 weeks and the arthritis is beginning to remit again. I found I didn't have to modify my diet at all to get rid of the inflammation. As long as I was taking jumbo doses of chlorella it didn't seem to matter. I was still even eating casein and gluten back then.

A lot of the neurotoxins that cause the inflammation are said to continually cycle through your body. Your liver tries to remove them, but can't clean it all out so it cycles back through via your bile. If you take chlorella exactly 30 minutes before you eat it is supposedly in just the right stop in your intestines to absorb the toxins in your bile that come in from your gall bladder. Gotta be a totally empty stomach though, and don't take any other supps or herbs with it.

Can't say personally how or why it works, I just know I did take it with food for a while and it didn't help. Then I read it was supposed to be taken this way and I tried it. I've only taken Source Naturals brand, so I can't vouch for any others. I've heard there's supposed to be a lot of variance in the quality of chlorella, so be careful. :-)

georgiagirl
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Date Joined Oct 2007
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   Posted 2/25/2009 3:40 PM (GMT -7)   
Sulma, do you mean no herbs and supliments
at all or just at the same time with the chlorella?

Sulma
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Date Joined Apr 2008
Total Posts : 366
   Posted 2/25/2009 5:07 PM (GMT -7)   
georgiagirl said...
Sulma, do you mean no herbs and supliments
at all or just at the same time with the chlorella?


oh sorry. No I just meant don't take anything else in the same moment you're swallowing your chlorella. Chlorella could also potentially interfere with the absorption of anything you take right before it, so it'd be a good idea to not take any other herbs within an hour before it. Thirty 30 minutes after you take the chlorella when you are eating your meal it won't matter what other herbs or supps you take.

georgiagirl
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Date Joined Oct 2007
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   Posted 2/25/2009 6:37 PM (GMT -7)   
bcaring, I was tested for epstein barr 2 yrs ago, not sure about the others. I had tons of tests though.

dorit, thanks for the information on the tests.

Sulma, thank you

LaughsAtDisaster
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Date Joined May 2008
Total Posts : 160
   Posted 2/26/2009 7:56 AM (GMT -7)   
I was MISdiagnosed with CIDP after 1.5 years of treatment (including 6 mos. IV rocephin). Numbness and redness and burning in my hands. Turns out I have severe mercury poisoning. Might want to get a chelation urine test from someone who knows something about mercury. Good luck.
Lyme, Bart, Babs and Ehrlichia for over 20 years
Misdiagnosed over 10 times
On treatment since 01/07


georgiagirl
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Date Joined Oct 2007
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   Posted 2/27/2009 7:49 AM (GMT -7)   
I have had a blood test for mercury poison, is that good enough or should I get a chelation urine test as well?

nervoustick
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Date Joined Jun 2007
Total Posts : 158
   Posted 2/27/2009 8:46 PM (GMT -7)   
My neurologist, not to be confused with urologist, told me that urine heavy metal toxin tests test for long time exposure/poisoning as the test draws metals buried in tissue out to be processed for elimination by the kidneys. A blood test would only seek metals flowing in your blood stream from recent exposure only. If you have mercury, like I do, then you know its affinity for getting into tissues. I was at 18 ug/l when first tested and after a year of chelation have gotten it to 4 ug/l which is still over the acceptable number. My neuro symptoms have decreased tremendously. My doc tells me it will be a year or so after ridding the body of mercury before the nervous system gets right again.

Best,

John

georgiagirl
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Date Joined Oct 2007
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   Posted 2/28/2009 10:52 AM (GMT -7)   
nervoustick, Do you have metal fillings in your teeth or did you?
I have about 5, I would love to get them out. I will get that test done if I can. Can my pcp do that test ya think?

nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 2/28/2009 12:05 PM (GMT -7)   
I DID have 4 and a little spot on another tooth (so 4.5, I guess). And I had them removed as soon as I found out I was an 18! Best to have them removed by a biological dentist who believes these can cause problems and will remove them carefully with YOUR safety in mind (as well as theirs, of course!) Since I had them out I was able to reduce the mercury in my body through chelation. My neuro, who is not necessarily hip with Lyme tells me that there was NO way I'd get better with Lyme treatment if I had mercury, because the mercury suppressed my immune system and did not allow the abx to work effectively and allow the immune system to beat down the Lyme infection, which makes absolutely perfect sense to me.

But just like Lyme, most dentists have been conned by their superiors (ADA and insurance companies etc.) to believe that mercury fillings do not cause mercury poisoning. So it is tough to find those dentists.

Your PCP can do the heavy metals test. Best lab to use is Doctors Data (you can Google them). It is a Urine Toxic Heavy Metal test. You can read all about it. Costs $110 and they accept insurance if yours will cover it. Your PCP can definitely order it.

Best to you--

John

georgiagirl
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Date Joined Oct 2007
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   Posted 2/28/2009 6:38 PM (GMT -7)   
Thank you John. What was it like when you had them removed?

nervoustick
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Date Joined Jun 2007
Total Posts : 158
   Posted 2/28/2009 8:20 PM (GMT -7)   
Wasn't bad. Just like getting any filling removed. Local anesthesia and drilling :) Had two done at a time.

THe most important thing though is that the office I found used some hi-tech equipment (vacuums and dams to keep you from swallowing bits of it and ventilators to remove gases, etc).

I'd definitely get the test done. Let me know how it turns out.

John

Jcullen
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Date Joined Mar 2012
Total Posts : 1
   Posted 3/24/2012 11:16 AM (GMT -7)   
Jcullen
I have CIDP and two neurologist that agree with the DX. It was preceded by two or threee years of severe muscle spasms and cramps in my legs. Sometimes it would suddenly hit during the night when I was sleeping. I was prescribed qualiquin or quinine for two or three years. It worked and the pain had been so severe, sometimes with both legs rigid, it was worth the risk even though it was not FDA approved treatment. The cramps and spasms suddenly stopped. I began to have an increase in mobility impairment. Two hospitalizations with IVIG didn't seem to help. I did have a reaction from the infusion being too rapid. I am now of mycophenolate. I have had no improvement, maybe progression is diminished. I am 79, a retired math teacher, and I like to sub. Three consecutive days and I need two days of pain medication. I can still walk with a struggle, but use an electric scooter when I work or shop. Any help or comments?

seekingbalance
Regular Member


Date Joined Jul 2010
Total Posts : 63
   Posted 3/25/2012 3:48 PM (GMT -7)   
Hi,
I have had many of the symptoms you mention: tingling/prickly feelings in the extremities, numbness sometimes halfway up my calves, blurred vision; sometimes my arm shoots straight up in the air in the middle of the night. I also had horrible restless legs and restless SPINE!! when pregnant, and a few times afterwards. This is not to mention the brain fog...
A few central thoughts:
VITAMIN B12:
I also had an earlier bout of odd symptoms in 2004 (before I was diagnosed with active Lyme in 2008)....sudden dimming/loss of vision and hearing(but I'd be completely conscious, it was like being trapped in my head and can't communicate with world for a few seconds), neuropathy, various cognitive problems including getting lost....after many docs practically laughing at me and my own research, I did find it was B12 deficiency, even though blood and spinal levels were "normal".....***BUT BUT BUT**** there ARE DIFFERENT FORMS OF B12. The typical one is cyanocobalamin.....this did not TOUCH my symptoms. Make sure you are taking the METHYLCOBALAMIN form of B12, from which your body can readily use the methyl group. 2mg daily orally of THIS DID THE TRICK--symptoms left within a week. When I recently had some restless legs symptoms, I asked my LLMD to prescribe me shots of methylcobalamin B12. You will not find these at your doc's office...you have to find a "compound pharmacy" which mixes up specialized concoctions. I found a compound pharmacy, and the methylB12 shots cleared the restless legs and improved all my neurological conditions a bit.
MY THOUGHT OF THE CIDP:
I am not a doctor, so please take that into account! But my take on Lyme: since I have had Lyme I've had anxiety, depression, tachycardia, high bloood pressure, hypothyroid, muscle pain, neuropathy, brain fog, memory problems, weakness, temperature, etc.....in other words this one disease triggered 35++ other conditions. So you may fit the diagnosis, but personally I would go after the Lyme, and try the methylB12......I have been treating myself with Cowden herbal extract formulae for 2 years. Some of these conditions are receding.....INCLUDING THE NEUROLOGICAL ONES. I think most Lyme-caused diseases are caused by the Lyme toxin, and are made even worse when we herx while treating the Lyme...but once the Lyme begins to clear, these other conditions--even the seeemingly permanent conditions...for me they seem to be clearing. I hav e only mild neuropathy, I still have brain fog, high blood pressure...but many other symptoms cleared. The restless spine syndrome (there is no such known condition, my doc of course thought I was a nut--but it's restless legs in your spine....can't bettter describe it).
So, try not to be too anxious....Lyme is evil, it wreaks havoc. Some effects/Lyme caused conditions can be permanent, but our bodies, including neuronal networks, are remarkably resilient, I truly now am a believer most of my symptoms will clear. My memory will never be the same, I will always have slightly numb cold fingertips....but the other scary scary things are gone.
I hope this helps...and remember, my comments are a layperson with Lyme, not a doctor....
Z.
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