Seeking advice/guidance

Hello!

I'm new to this site so forgive me if I'm posting in the wrong place. I'm looking for some advice regarding medical issues that I've recently realized may be related to Lyme. I'll try to keep it short, and I'm happy to discuss more at length in private messages or email.

about a year and a half ago, I started experiencing severe blood pressure spikes and a hive-like rash on my face and neck. I hesitate to call the rash hives because it appears more like a combination of flushing and rosacea. I've seen two dermatologists to no avail, walking away with a rosacea diagnosis and a treatment plan of "sorry about your luck." I've seen two primary care practitioners for blood pressure and am currently taking two prescriptions meds for BP with no idea what's causing it. I also experience almost daily migraines which no doctor has been willing to treat or acknowledge, terrible night sweats and awful insomnia. I'm seeing a psychiatrist and therapist now for anxiety and depression, and I'm on a cocktail of meds for that too. It's been a pretty miserable year of not being able to work or live my life how I used to.

I don't recall a bite that would be the start of a Lyme infection, but I live in between woods and farm fields, spend lots of time working outdoors, and have also struggled with flea problems with my cats and dogs. A friend of mine was recently diagnosed with Lyme and Bartonella.

I had blood work done in the fall of last year with a few abnormalities that concerned me, but didn't raise any red flags with doctors. I don't know anything about what these mean but here are a few of the abnormal markers:

Segmented neutrophil: 71.7
Lymphocytes: 15.0
Monocytes: 8.4
Eosinophils: 3.6
Basophils: 1

I guess my question is: is it logical to assume I may have Lyme? Will I sound crazy if I ask my doctor to test for it, or am I best off going to yet another doctor? I have felt like crap for such a long time and I feel like a hypochondriac, but it really seems like this makes sense. I would so appreciate any feedback or thoughts about my situation.

Thanks so much in advance and have a great day!

-Zach

Zach, if you do decide to be tested for Lyme and co-infections, bear in mind that testing methods are not very accurate because of the disguising ability that Lyme has, and the co-infections have to in your bloodstream rather than tissues at the time of testing.

Meaning you may get an "indefinate" or "negative" result and still be infected.

There are two more dependable ways of getting a more accurate test. One way is through IgeneX labs (link in intro), which use better testing methods and more response bands.
With this lab you have to order the test yourself and have an MD sign off on it. Insurance does sometimes cover it, but if not, the basic lyme test is just a little over $200.

There is another form of test that looks for the bacteria's DNA in urine. Connexions that one is called.

It's not really an adequate amount to treat Lyme, and in fact will likely drive the bacteria into cyst form as part of it's evasive measure.

That being said, when symptoms get "way worse", it's generally herxing going on. You aren't being silly.

Herxing is a reaction to built up toxins, and the Doxy is going to hit some of the bacteria and there will be a die off of the bacteria which can lead to an overload of toxins the body deals with normally on a constant basis.

You need to help your body rid itself of this back up by following a number of simple de-tox methods. Here, and outlined in our "New to Lyme" intro. www.tiredoflyme.com/detox-methods.html

On the testing, if you have any insurance that will cover a conventional lab test, try to make sure it's a Westernblot and just about any lab but Elisa.

You need one that supplies you with the readout of the band reactions, not just a lab summery of their opinion.

Members here can help you here figure out what the results mean more accurately than a NON Lyme literate MD.

Thanks again! I really appreciate your taking the time to respond. I'd never heard of herxing but wow, that makes so much sense. I'm feeling a little better about all of this after looking at the detox page. I recently bought a cleanse supplement that contains a lot of the things listed on that page. I was hesitant to start it but I definitely will now. I also regularly take apple cider vinegar and turmeric. I happen to have bentonite clay and DE on hand so I'll look into that and the coffee enemas. Hopefully I'll be able to ease the herxing. I'm going to talk to my doctor about the tests and then maybe increasing the Doxy.

Traveler, I do have good insurance for the most part, especially prescription coverage (although that goes away in June when I turn 26 so I'd better take advantage now!). Any suggestions on how to find a LLMD, so I could check with my insurance about coverage? I'm also more than willing to try any herbs or supplements. I've tried a round of high dose oregano oil, olive leaf, and vitamin C, with no major improvement.

Yep!!

F​​or 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 may 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 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​

​ ​You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals

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

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, 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: www.ilads.org/lyme/treatment-guideline.php

Sigh, Traveler, now it's my turn to do it! Methinks we have two many cooks in the kitchen? LOL.

Keep track of that information! Your LLMD will want to see it,a s it will help them assess what all is being impacted by these infections. Otherwise, unless something is really off, it's best to allow your doctor to evaluate it.

As for talking with any other doctors about these infections, it's most likely that they won't believe that you have them. They were not taught anything of any value about these infections in school, and unless they are one of the few that have gone on to educated themselves despite the controversy, they won't want to deal with these infections. Many here have had a ton of misdiagnosis from doctors just like that, they simply don't believe these infections can do what they can really do.

Even though these are older articles, not much has changed unfortunately, here are some links that will kind of help you understand the differences in the way the two 'camps' think:

​​
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

zachxcastle said...
Skyy, I'm so happy to hear I'm not alone in regards to the strange hives. Mine are not so much itchy, more burning and usually isolated to my face, neck, and upper chest. It only appears in situations where I would otherwise be blushing or flushing, like when I'm nervous or hot but this is so much worse! Do you mind me asking what was the dose of Doxy that you took for the three week course? I know my dose (150mg) is not enough; I'm curious about what the standard dose and duration is for Lyme. I hope the struggle is in the past for you, and I hope it will be for me soon too!

I'm thrilled with all the support here so far! Super grateful for all of you.

Thanks,
Zach

My personal opinion based on my experience 3 weeks of Doxy isn't enough unless you are fresh bit, and even then results will vary.

I was on Doxy for 3 months! 200 mg twice a day.

Here's another problem, you need to be on at least 2 antibiotics simultaneously. Many people take 3. You start with one and after slightly less than a week, start another.

These varmints need to be come after will more than one approach in order to catch their various formations.

julymorning said...
There is another way to handle this while you wait to see an LLMD.

You could take herbs with the Doxy. Some herbs are microbial in nature and can help, plus I think it would be helpful to start on a liver support of some sort even if you stay with just antibiotics.

Have you gotten yourself familiar on this board about taking pro-biotics to replace what the Doxy is killing?
And of course the ever needed de-toxing protocols.

I have not done much research into probiotics. I do take digestive enzymes and I eat yogurt regularly, but I'll do some more reading into probiotics and liver support. I have a detox supplement that contains senna, bentonite clay, and milk thistle, so I'll start that today. Is there any chance this could interfere with the blood pressure medications? I take propranolol and amlodipine.

Thanks a million!

I was given 200mg 2x a day for 21 days, but... July is right. Only one antibiotic, and that dose, for that length of time, is usually not enough. Regrettably that is the standard prescription given by regular non-LLMD doctors. In their opinion, the bacteria is eradicated in that span of time.

After a LOT of research, i found an LLMD and got an appointment a week after i finished my 3 weeks of Doxy.

He, on the other hand, gave me a combination of 2 antibiotics (Minocycline 100mg 2x a day, and Metronidazole 500mg 3x a day) and a few days after that i experienced my first herx (or side effect from Metronidazole? up to now i don't know...could be both. I also was not detoxing enough at the time).

That is also the time i found this forum and found help here.

I am still treating with antibiotics, but i suspect that my doctor will get me on herbs soon (I hope!! I hope!!)

Post Edited (Skyy) : 3/25/2017 3:06:04 PM (GMT-6)

Zack, did you do the questionaire that Traveler linked for you? It's a really good idea to not only take it, but have it in copy and after you mark off symptoms you've had, keep it to take with you to whatever Lyme Dr. you go see. lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

It is hard to keep track of and remember every weird feeling/pain/itch/twitch, etc, we have in light of whatever is currently bothering us. Having something like that on paper may prove invaluable.


I repeated that link because often times symptoms have to be considered above test results, due to what has already been explained.