IS THIS SD OR RAYNAUDS FLARING

[DAR]

Would appreciate any input on this I am having my finger tips feel like I have all kind of picky thorns in them and my feet are burning on the bottom and on the top of them ? I have been feeling so good for a quite a while and I am really blown away with these symptons, is it a flare in SD or my Raynauds, I am kind of panicking on this I just can’t go back to the way I was when I first came down with the SD and Raynauds, I am taking mino 100 x 2 dailey, if anyone has experienced this please tell me what you have to done …..
Dar

[hopefulmama]

Hi DAR,

Hang in there! If you have SD it may be that you have lyme in which case the mino on its own might not be quite enough to keep the little buggers (literally!) calm… so that gives you another route to check into, and a lot of options in terms of modifying your current protocol.

Also, could it be a side effect from something new you have added as a supplement or to your diet? I ask because I noticed while taking Transfer Factor Multi-Immune (which is loaded with fancy mushrooms and certain vitamins) that my hands began to burn noticeably especially in the cold or air conditioning (Raynaud’s) and this concerned me a lot. Just on a whim, I decided to cut out the TFMI for a week to see if the effect went away. It did! I haven’t had the problem again since, even when my hands were very cold. No burning. So, sometimes a food or supplement can cause burning side effects.

Sending you lots and lots of hope and good wishes. Seems like the road back can be a winding one, but in the end, you’ll be 100% and all of this will be worth it.

Warmly,
A

[Melinda]

Hi DAR,
I have Raynaud’s and SD but without any skin tightening. I don’t know if this will help, but when I’ve had a really bad Raynaud’s episode, I’ve often had pain in those digits for quite a few hours afterward. Since I see that you are in WI, I just wondered if might have gotten too cold lately and that might be the problem? Since I don’t have the typical SD skin issues (yet, and hopefully never), I really can’t speak to that, but I did wonder about the Raynaud’s. BTW, last month I started taking time-released niacin to help with my Raynaud’s and it’s already pulled me out of 2 really bad Raynaud’s episodes and quite quickly. I’m not a great candidate for the BP meds that are often used for Raynaud’s as my BP is naturally very low, so this has been a good alternative for me. Just my fellow patient experience though, but maybe worth asking your dr about. Do you have an AP dr that you can consult to ask about the problems that you are noticing? I hope that you find the answers that you are looking for.
Melinda

[Maz]

Hi Dar,

In addition to the above, just to add that your symptoms seem to equate to peripheral neuropathy. I think you might something here that you will recognize in terms of your symptoms:

http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/aboutpn/symptoms/

For Raynauds or any type of circulatory problems (e.g. blood pressure), L-arginine is worth researching to see if it would help with the advice of a physician, of course, to ensure there are no drug interactions (especially if one is already on any type of anti-hypertensive med or vasodilator medication):

http://www.webmd.com/vitamins-supplements/ingredientmono-875-L-ARGININE.aspx?activeIngredientId=875&activeIngredientName=L-ARGININE

Dar, it’s been a while and sorry to hear you’ve had a return of symptoms. As mentioned by Andrea above, untreated coinfections can definitely arise later in treatment and it’s worth checking into the possibilty of Lyme, particularly as you hail from Wisconsin where it’s pretty endemic to the region. 😉 If you decide to check further into this, we’d be happy to share resources with you to move through this process.

[DAR]

Maz, I would like some kind of input in checking out the lyme possibility, what test do I actually ask for and I see that from other posts that most people get there testing packages from Ingex lab, so do I get it from them? then ask my dr to do the test?
Dar

[Maz]

@DAR wrote:

Maz, I would like some kind of input in checking out the lyme possibility, what test do I actually ask for and I see that from other posts that most people get there testing packages from Ingex lab, so do I get it from them? then ask my dr to do the test?

Hi DAR,

Here is the link to the IGeneX labs: http://www.IGeneX.com

You’ll find their phone number on their site. Just put in a call to them and ask them to mail you a Lyme testing kit. It comes with all the paperwork needed, the vials, packing materials and return mailer. Should arrive shortly in the mail to your home.

Then, one just takes it to the doc who needs to sign off on the lab requisition sheet. The results get returned to the ordering physician, so it’s important to get hard copies as most docs have no idea how to interpret them, unless they’ve had training. We can provide links to help with interpretation and there are some experienced Lymies here who can also offer their insights on the results, if you need support.

The basic western blot test is usually the one folk start out with, because it’s $200 approx and can often provide enough info to decipher if Lyme is a potential culprit. If not, the lab hangs on to the blood sample for a month or two so further testing can be done if further etiope testing on a particular antibody is needed to confirm Lyme. Usually this isn’t needed, but can be helpful if in doubt, as most LLMDs consider Lyme to be a clinical diagnosis, anyway, and labs just provide nice confirmation if positive.

The test #s for the basic western blot is #188 and 189. This will give you two test results for IgM and IgG….IgM is present infection (within the past 6 weeks) and IgG (late infection after 6 weeks). Thing is, Lyme waxes and wanes, so it might look like a present infection on results, but is actually a late stage infection that one has had a long time. So, it’s the total picture of antibodies that are taken into account on both results.

IGeneX has different criteria from the CDC for a positive results for reasons I won’t bore you with, but you should see two results for each test…a CDC result and an IGeneX result.

Once the doc signs off on the lab, you then just take the kit and signed lab order to your local blood draw place. There might be a small fee for the draw, but Quest kindly did mine at no charge. They process the blood as per the kit instructions and pack it in the kit. Then, you just add your paperwork and check in the pre-paid return mailer and take it to your local FedEx drop-off point. I think it’s FedEx, not UPS….but I had this done 4 years ago now, so my memory is failing me on this.

Best to get blood drawn early in the week, because the blood can degrade in the mail if it’s sitting in a mail depot over the weekend. Results usually take 2 to 3 weeks from sending them in the mail and you just get a hard copy and you’re set! 🙂

Dar, you can also just get the standard tests run first, which are two-tiered…the ELISA and western blot. This can save money getting IGeneX labs run if the results return negative…standard tests miss up to 50% of cases, but it’s worth a shot if you think your doc might humor you with more testing later. Or you can always order the standard tests and get him to sign off on the IGeneX labs at the same time to save two trips. Then, just send off the kit if the standard tests aren’t any help. One lady in MA just saved a bundle on IGeneX testing and was lucky to test unequivocally positive on standard tests.

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