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Still technically undiagnosed...few questions

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Posted 8/19/2015 2:58 PM (GMT -5)
Teejay86,

If you are taking antibiotics of any type, you should be taking probiotics....a variety of them. Antibiotics kill ALL of the bacteria in our bodies....and we need the good bacteria to stay.

Taking probiotics 2-3 hrs after your antibiotics doses will help to replenish some of what is killed.

I can't speak for others but, I can tell you that no way, no how would I agree to a lumbar puncture. You have Lyme and most likely co-infections. What would getting a lumbar puncture accomplish....except maybe to help the doctor think his/her butt is covered?

Also, the bacteria that are already inside of you have gone through numerous growth cycles already. This means that you have bacterial debris in your system that is most likely exacerbating your symptoms.

The debris will increase significantly as you go through treatment.

If you increase your detox now, you will surely benefit. Otherwise, you might have to slow treatment down to let your body catch up with all the killing.

Just adding a cold rinse at the end of your shower will help. So will dry skin brushing.

The site I'm linking below has quite the comprehensive list of effective detox methods - take your pick ;)

www.tiredoflyme.com/detox-methods.html
Posted 8/19/2015 3:04 PM (GMT -5)
That is some great info - thank you! I think I'll treat myself to an epsom bath tonight and start picking and choosing my herbal supplements after I see the doctor tomorrow :)
Posted 8/19/2015 3:16 PM (GMT -5)
Happy to help :)

Hey - if you decide to go the herbal route, please do NOT start everything at once.

Herbs are quite powerful and it's best to introduce a very small amount of one herb...and then wait a few days to make sure you're tolerating it and can manage any possible herxes on it.

Then, you can start another herb and follow the same procedure until you're started on everything. Moving forward from there, you can slowly increase the doses of everything.

The key here is to avoid herxing...or at least minimize them.

Here's a little bit of info on herxes:

www.lemonandlyme.com/Articles/Expect/Herx.php

Herxes increase inflammation and that's the last thing we need. Besides, they're uncomfortable and sometimes really, really uncomfortable. That's when increased detoxing can help.

Anyway, if you opt for tinctures, it would be prudent to start with one drop - yes, one drop. In fact, I think it's a good idea to start with tinctures because it gives you more control over the size of the dose.

Oh - an important note about your epsom bath - yet another thing to slowly ease into. Some people have reported pretty intense herxes after an epsom bath. I suggest you start another thread for recommendations for starting because I don't know the details (no tubs in my house ;)

Good luck tomorrow and please let us know how things go.
Posted 8/19/2015 3:20 PM (GMT -5)
Thank you for all the warnings. It's good to hear all this from people who have been/are currently going through it. This is the most information I've gotten in weeks (besides the research I've done on my own). And I don't even have to pay copays to talk to you guys! tongue
Posted 8/19/2015 3:50 PM (GMT -5)
I would say yes to deny the lumbar puncture. There has to be a large number of bacteria in the spinal fluid to show up as a positive on the test - which is very hard to have.


Don't eat your yogurt at the same time as you take your abx - eat it about 2 hours later. The abx are killing off the good bacteria as well as the bad, so the yogurt only does a very limited amount of good when taken within 2 hours of the abx. By waiting that time, the abx have moved on past the digestive system and you will be replenishing the digestive tract with the good bacteria in the yogurt then.
Posted 8/19/2015 5:27 PM (GMT -5)
Thank you! I will start spacing out my yogurt. Makes a lot more sense; I guess I just never really thought too much into it.
Posted 8/20/2015 4:13 PM (GMT -5)
Saw the ID doctor today. Was not all that impressed with her.

She recommended a consult with a neurologist as well as a spinal tap. She did not want to treat me until I got the spinal tap. I told her I would like a second opinion. I'm currently waiting on a call back for her to answer some specific questions. I would like to know exactly what tests she plans to run on my CSF; if she is only looking for Lyme, I see absolutely no reason to go through that.

I did, however, get some more bloodwork done today. Checking for babesia, anaplasmosis, and ehrlichia. I tested negative for Bartonella on my last test.

Currently I would like to get a neurological consult, but no spinal tap. Also, I would like some TREATMENT!

Thoughts?

Post Edited (Teejay86) : 8/20/2015 3:32:46 PM (GMT-6)

Posted 8/21/2015 10:39 AM (GMT -5)
I would encourage you to stand your ground!! Getting things checked out is always a good idea, then you know what you are dealing with and what you can rule out, but as you know understand, spinal taps aren't accurate enough to take the risks.

For proper treatments though, I'm afraid you will have to see a doctor that has been properly trained instead of these who only think they know about these infections - or start on your own with one of the herbal protocols that you can do at home.
Posted 8/21/2015 2:43 PM (GMT -5)
Luckily I found an LLMD nearby that charges a reasonable price for initial consult and followups. Also I was able to get an appointment for this Monday! I am hoping for the best. I will report back with what his advice is.
Posted 8/21/2015 4:42 PM (GMT -5)
Wonderful!!! Be sure to take a notepad or something to take notes with, as there should be a ton of information shared at the appt. And ask if they are ILADS trained!! No need to even get started with a doctor that won't see you through all the treatments you may need.

Can't wait for your report of how things went!!!
Posted 8/21/2015 5:55 PM (GMT -5)
I got the recommendation for him through ILADS, so I would assume he is indeed ILADS trained. Am I right assuming this? I will definitely ask to be sure.
Posted 8/21/2015 6:38 PM (GMT -5)
No, you should be able to assume that, I'm just a bit paranoid is all!! LOL! All LLMD's are not create equal though, there are some ILADS trained LLMD's that are not even diagnosing properly from Igenex tests. Just keep an eye on your treatments and any questions you have, don't hesitate to ask for explanations from your doctor, or ask questions here!
Posted 8/21/2015 7:07 PM (GMT -5)
Thank you! Don't worry I am skeptical of every single doctor I see at this point, lol!
Posted 8/22/2015 9:50 AM (GMT -5)
LOL! Same here, it happens.
Posted 8/22/2015 10:10 AM (GMT -5)
Happy for you that you'll be seen quickly at a reasonable price!

I must admit I got to wondering if you'll be seeing my LLMD because I was able to get in to see him within a week of my call (he's a homeopathic GP) and he's reasonably-priced ;)

Are you in NJ, by chance?
Posted 8/23/2015 2:37 AM (GMT -5)
Hi Teejay86,
Email sent! Sorry I'm a bit late...I have been away from the computer for a few days.

I hope the LLMD you found works out, if not you also have the one I just sent you too. :)

Post Edited (Livinginct) : 8/23/2015 1:54:49 AM (GMT-6)

Posted 8/23/2015 1:43 PM (GMT -5)
cd3764 I am not; I'm from CT actually.

Livinginct, thanks again for the recommendation! It always helps to have a list of doctors to call, lol!
Posted 8/23/2015 7:15 PM (GMT -5)
Hey, I think a plan A strategy for coping with Lyme is doing your own research. Most LLMD's are putting their patients on herbs now. And luckily, these herbal anti-microbials are OTC. You may not get the same punch as you get with antibiotics, but that isn't even a bad thing. You can save your stomach and your money by at least trying the herbal route.

Long term antibiotics are hard on the liver and stomach, not to mention immune system. But herbs, diets, exercise, these things are expensive but don't cost an arm and a leg. Stress of debt is almost as bed as the disease!
Posted 8/26/2015 10:16 AM (GMT -5)
Hello. Just a quick response to your post. First, I'm SO sorry you're dealing with Lyme. I am too. I'm still not officially diagnosed either but know I have Lyme. Bit 20 years ago, had a "bullseye" but was unfamiliar with Lyme. In the next few months, developed Trigeminal (Glossopharyngeal) Neuralgia.....followed by a never-ending list of symptoms I've suffered ever since. All this time and approximately 35 doctors later and MULTIPLE diagnosis classic to what all Lymies have been previously diagnosed with: Fibro, Rheumatoid Arthritis, Tachycardia, COPD, Bipolar, and on it goes......! I FINALLY began self-advocating and researching resulting in the conclusion of Lyme. Recently, my MD did blood work per my request for Lyme. He said "Nothing clinical to worry about." (Shocker, right?! TYpical of MDs) BUT I had reactive bands indicating the presence of Spirichetes from an old infection. Again, just as I suspected. Thank God we Lymies are good at research. Now, I need a LLMD ( which can't seem to be found in Ohio !!!!!) clinical diagnosis and treatment. I am lost and lonely, in constant pain and MANYYYYY other symptoms. To sum it up, I feel for you and know the battle is HUGE. Blessings
Posted 8/26/2015 10:54 AM (GMT -5)
Thank you for sharing your story. It's always comforting to know that we are not in this alone. Keep up the battle! Hope you find your answers soon.
Posted 8/26/2015 11:11 AM (GMT -5)
Hi Teejay. I was sick for 2 years, seen by 21 doctors, specialists. Tested 5 times ELISA all negative.. I don't remember seeing a tick, I did not have a bullseye per se or rash. I had an infected bug bite with fever per my PCP. I finally went to a LLMD and well worth the money. He ordered the correct tests which were positive. My husband called our insurance and they may reimburse us 80% on some of my costs. I recently learned Of a Specialist who does accept insurances. I live in New York state. Keep researching you may find one that accepts insurance. You really need to be seen by someone who knows what they are doing and how to test. I went through labs, xrays, CT, MRIs, surgery to remove lymph nodes, bone marrow biopsies. And pretty much told I was imagining the lyme disease and crazy. Stay strong, this sucks and its exhausting and frustrating. Im happy you found this forum as I am.
Posted 8/26/2015 11:13 AM (GMT -5)
Thank you!

I actually did find an LLMD. I started a new thread on that. I am starting my 2 month abx regimen today :)
Posted 8/26/2015 11:29 AM (GMT -5)
Hi DeZignerwithLyme - welcome to our community! I am sorry you have been suffering for all these years! But, I am glad you found us here.

We can help you find a LLMD - just start a new thread titled: "Looking for LLMD in/near______" and fill in the blank.

Also, you might be interested in reading the "New to Lyme?...Start Here!" thread at the top of the page. It's full of good information - symptom lists, info on probiotics, detox suggestions, and much more!

I hope you keep reading, posting, and asking any questions you have. this is a supporive and knowledgeable group of people.
Posted 8/26/2015 2:13 PM (GMT -5)

DzignerWithLyme said...
Hello. Just a quick response to your post. First, I'm SO sorry you're dealing with Lyme. I am too. I'm still not officially diagnosed either but know I have Lyme. Bit 20 years ago, had a "bullseye" but was unfamiliar with Lyme. In the next few months, developed Trigeminal (Glossopharyngeal) Neuralgia.....followed by a never-ending list of symptoms I've suffered ever since. All this time and approximately 35 doctors later and MULTIPLE diagnosis classic to what all Lymies have been previously diagnosed with: Fibro, Rheumatoid Arthritis, Tachycardia, COPD, Bipolar, and on it goes......! I FINALLY began self-advocating and researching resulting in the conclusion of Lyme. Recently, my MD did blood work per my request for Lyme. He said "Nothing clinical to worry about." (Shocker, right?! TYpical of MDs) BUT I had reactive bands indicating the presence of Spirichetes from an old infection. Again, just as I suspected. Thank God we Lymies are good at research. Now, I need a LLMD ( which can't seem to be found in Ohio !!!!!) clinical diagnosis and treatment. I am lost and lonely, in constant pain and MANYYYYY other symptoms. To sum it up, I feel for you and know the battle is HUGE. Blessings

Hi DzignerWithLyme!!

Welcome to our community!! I'm so very glad you chose to join in!

As Girlie said, if you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I likely have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php
Posted 8/26/2015 9:51 PM (GMT -5)
Pudendal neuralgia can be caused by trigger points in the pelvic floor muscles.

Homemade kefir, a fermented yogurt-milk concoction, is a much better alternative for probiotics than store bought yogurt. Probiotic pills count bacteria in the billions, while a glass of kefir will have over a trillion. The only drawback is that you must be able to do a little work to keep the culture alive.
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