Neuro Lyme Disease

Hi intrepidkira - welcome!

The testing for these lyme and co-infections is not accurate, unfortunately.

The Western Blot relies on our immune system to produce antibodies to the bacteria. When we have these infections, our immune system suffers..and often can not mount a response that is required for a positive test result.

But, there are poor testing labs...and better ones.

If you want to retest for lyme - you can go through Igenex (they specialize in tick-borne disease testing) - a lyme western blot IgM and IgG will cost $210 (plus whatever you may have to pay for the blood draw).

Your response (worsening of neuro pain ) is typical when we go on antibiotics for these infections. The antibiotics kill the bacteria, which then produces endotoxins. The endotoxins flood out system and the resulting inflammation causes an increase in current symptom...and/or the start of new symptoms.

To help alleviate the herx reactions - the best thing to do is detox. You need to employ multiple methods daily...starting with a couple...and every few days adding a new one...gradulally building up to many daily.

Here are a few to start:
- Drink at least 8 glasses of water daily
- Add fresh lemon juice to some glasses (drink thru a straw so not to damage tooth enamel..rinse mouth with clear water after, and wait 30 minutes before brushing teeth)
- Take probiotics daily
- Take something to support your liver (eg. Milk Thistle extract)

Here is a site with a lot of good ideas for detox:


www.tiredoflyme.com/detox-methods

I suggest you find a LLMD and schedule an appointment. We can help with this.
Start a new thread: "Looking for LLMD in/near______" and fill in the blank. Then enable your email through "My Profile" so members can send you names privately. We don't post their names on here - for privacy reasons.

Or..you can contact me (send me an email) - and I will check my list of LLMD's. Please be sure to state in your email what area you are searching .

In addition you can contact ILADS:

ilads.org/ilads_media/physician-referral/

We encourage our new members to read through the information included in the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Welcome intrepidakira -

I'm sorry you've had such a crazy ride so far. Girlie explained why confusing test results reinforce how unreliable the serology tests are. We know this about the Lyme & co tests (including coinfections) but the viral tests are also unreliable.

And truth be told, you could have had a positive Lyme test already but most MDs don't know how to interpret the tests correctly...or that the tests shouldn't be relied upon for diagnosis. Please feel free to post results - we can help you interpret your own results. You do not need medical training to do so.

Girlie covered all the other welcome wagon info.

Please let us know if you have any other questions- we're here to help!

-p

Welcome,

We are glad you found us!

Ask alot of questions. Lyme and everything that goes along with it can be a complicated subject unfortunately

Hi Intrepidakira!
Welcome to our community! I'm so glad you found us.

I would encourage you to do the detoxing to help control your symptoms. Anti-inflammatories can also be a huge help with neuro symptoms.

No matter which test it is, if you have a strongly positive test for Lyme - you have Lyme. Those that have only one Lyme specific band are often told that it's not Lyme -and yet when you have a response on a Lyme specific band, there simply is nothing else that can produce a reaction to that band! It's all because this is a huge political fight that we are caught in the middle of.

I really like using Yogi brand detox tea (original flavor) as it helps to detox my liver and kidneys - but only drink one cup of this a day. You can dig into herbalism a bit and see which herbal teas can help your symptoms - just be sure to check for interactions with the meds and other things you are taking at the time as well. Turmeric is a great anti-inflammatory and you can make what is known as turmeric milk if you wish to drink it like that. I need to take turmeric several times a day, so I prefer the capsules that I fill myself.

As far as how long it will take? No one can answer that question, unfortunately. It's different for each of us. Once I was on the right treatment for me, I knew within 3 weeks that I was improving, some see improvements sooner, and some don't see improvement for a few months. There are so many different combinations of things that we all deal with, so it depends on what all you are dealing with also.

But - keep asking those questions!!! We are here to help as much as we can! Just remember to double check all information. We are all just human and mistakes are made, not to mention that just because it's good and helping one person, it doesn't mean that's what the next person needs.

Yes -
A herx can be exacerbation of original issues you attribute to the Lyme & Co that you are treating, and any other Lyme & Co associated symptoms that the antiicrobials can stir up from the treatment.

If you're familiar with the Lyme & co symptoms it's easier to discern herx responses to antimicrobials from sensitivities/allergies. Some people stop using Rx or herbs because they "react" to them but it's important to understand why you're reacting and if it's a herx, it's important to keep treating.

Herxing can be quite informative - letting you know that yes, the infections are being "hit" by the antimicrobial. Although you don't want to herx severely - this can cause your body a lot of stress, which isn't healthy. It's best to find the "sweet spot" where you get good feedback but it's also manageable and enables you to keep moving forward, pushing doses towards optimal levels, which are unique for each person.

-p

You should stop the abx until after you call your doctor. That rash may be an allergic reaction - you need to call your doctor today. Please do not put this off. We use fairly large doses of abx/herbs and if you are allergic or have developed an allergic reaction, it can get serious quickly.

The twitching could be a herx or could be from the need of your body for more magnesium. Is this one of the things you are supplementing? If so, you may need to raise your dose, if not, here is a great site to help you pick the right type of magnesium to help: /www.globalhealingcenter.com/natural-health/types-of-magnesium/

My small fiber neuropathy healed - but it did take a while. I was in treatment for Lyme my first set of infections for 1 year, but I no longer had symptoms by about 10 months into treatments. I've been lucky that it's not as bad with this round of infections - of course, I caught the infections and started treating them about 40 years sooner too!

If this is indeed a herx, what does your detoxing routines look like? Good detoxing is essential for the majority of us trying to heal.

Here's what mine looks like: I use a foot soak,
dry skin brushing,
making sure my bowels moved at least once a day (sorry if it's TMI!)
pushing myself to drink at least 64 ounces of lemon water each and every day,
liver/gall bladder flushes (all natural), as needed,
oil pulling with tea tree oil,
taking activated charcoal, as needed,
Alpha lipoic acid,
Quercetin,
​ turmeric,
Methyl B-12 and methyl folate,
Dandelion tincture,
red root tincture,
Yogi brand detox tea (original flavor)
Have recently added cytokine remodulators - Chinese Skullcap and Red clover extracts
and keeping the amount of stress in my life at a bare minimum.

​ I have used apple cider vinegar to help with detoxing as well - it's really good, but started making my stomach issues worse, so I stopped using it daily and only use it occasionally when I know I need a boost in my detoxing for just a day or two.​

A few of the things on your list are on mine too. I have alpha linoic acid, tumeric (as of tomorrow), Vitamin b12 and complex, drinking volvic lemon water (a litre minimum per day), magnesium, multi vitamins and lots of hot baths. Also sleeping lots at the moment.

I will - already ordered some more herbs and increasing my water intake. Coming up to my third week on the antibiotics now... was hoping I'd start feeling better 😞