HealingWell
Search Close Search
☰

I spoke too soon

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/27/2016 8:08 PM (GMT 0)
Sure enough, two days after I wrote how much better I was doing, I woke up with a sharp pain in my hip that has been going on for four days. An ultrasound showed that it is a not a cyst or a clot, so it's just...pain. Vague pain that wakes me up in the night yet is..."nothing." Maybe a "muscle spasm."

My eyes have also been irritated which the eye doctors said were allergies. They gave me drops.

Today, the joint in the palm of my hand/wrist is swollen. I have not ever had swollen joints, mainly just pain in forearms, etc.

Two nights ago I was very anxious again with the pain in my leg.

I made an appointment with an LLMD. I probably should've done that two months ago, but I listened to my friend who got completely better on a month of doxy and has the same rheumatologist. No matter what though, I keep seeing bad reviews on all these LLMDs that I read about. Some good, yet some scathing -- that they want to take your money and you leave even worse. Can you please tell me this isn't true and that you can get better taking all of these antibiotics?

I still have a lot of energy but these symptoms are not right. I don't feel like I am on the brink of death like I did in March, but I still do not think I should have entirely new symptoms after treatment.
Posted 5/27/2016 8:13 PM (GMT 0)
I am so sorry Misty.

When my inflammation was bad I had to take Advil so I could sleep.

Antibiotics can get a bad rap. Many on here are really finding good outcomes.

Hang in there and you will get better again!
Posted 5/27/2016 8:37 PM (GMT 0)
Thanks, Peteza. I hope this does not go on for the rest of my life. It seems like an awful disease.
Posted 5/27/2016 9:17 PM (GMT 0)
Please check your eye drops and make sure they don't contain steroids. Steroid use will lower the immune system, making it much easier for the bacteria to replicate.

I'm so sorry you waited - when it comes to Lyme, unless you are talking about making it through treatments - nothing good has ever come from waiting. 30 days of treatment won't take care of these infections, unless you are in the earliest of stages - meaning NOT having symptoms in more than one place/system of the body.

While antibiotics are not the right choice for everyone (it wasn't for me), that surely doesn't mean that with the right doctor, they are harmful. The point is to kill the bacteria, not us. And while these treatments may be hard on the body, I can guarantee that going without that treatment will cause more damage. You will need to be on probiotics and help your body to detox and more, but to get rid of the infections is worth it.
Posted 5/27/2016 10:30 PM (GMT 0)

misty51 said...
I keep seeing bad reviews on all these LLMDs that I read about. Some good, yet some scathing -- that they want to take your money and you leave even worse. Can you please tell me this isn't true and that you can get better taking all of these antibiotics?

Hi misty---
Be assured, the internet is the worst thing to happen to the lyme lies machine (IDSA + CDC + ADLF collusion to keep patients ill and MDs from treating us). While there is still a lot of tomfoolery, the lies and obfuscation are slowly being drowned out by the TRUTH about lyme & co.

However, there is still a lot of bad stuff out there. Through the FOIA (Freedom of Information Act) producers of "Under Our Skin" and the sequel "Emergence" lyme documentaries discovered that the lyme group that is fiercely trying to defend IDSA's terrible guidelines were sending email communication to each other referencing that they were "losing the scientific argument about lyme against lyme loonies and their quack LLMDs and needed to attack using socio political tactics."

There are other scathing comments made about waging a war on us - if you haven't already please watch these videos - this history is all very nicely laid out in the documentaries, complete with the actual images of the communication about this. It's stunning.

Awhile back, it was revealed that employees at NIH (National Institutes of Health) were frequenting websites and comments sections in articles and slandering both lyme specialist MDs and their patients. If you'd like a reference for an LLMD, ask the office to provide you with patients' contact info who are willing to provide a reference... That's not to say that ALL negative information is planted, but most of it probably is-- it's been a proven tactic (they're STILL doing it) and it's way too easy to do.

misty51 said...
I still have a lot of energy but these symptoms are not right. I don't feel like I am on the brink of death like I did in March, but I still do not think I should have entirely new symptoms after treatment.

Treatment is a layered process and for most of us--a few months is just getting a good start.

I think the others mentioned this but it is VERY common to expose new symptoms (and can be good info)--in many situations it's the treatment hitting new pockets of the infection. It could also be reactions to the treatment and signal that you need to improve detoxing... you have to test out a few responses to see what works best for you.

Hope this is helpful - if not please keep asking questions!

-p
Posted 5/27/2016 10:44 PM (GMT 0)
Traveler, thank you. That's really helpful. I think the drops do have steroids. I didn't know that.

What got you better?

I have an appointment at the end of June with an LLMD that someone recommended to me here. In the meantime, I got the guy filling in for an ID doctor I saw once to write me a prescription for a month of amoxicillin to get me through until I see her. I guess that's the best thing to do. There's one is Mt. Kisco too that I could maybe see sooner. I'm not sure what to do.

The original ID doctor saw my first tests done by the rheumatologist and the GP. There were two positive CDC tests for Lyme from two different doctors (IgM); she ran her own tests, and I guess I only had three IgG bands at that time (not 5) when she tested me and only one IgM band then, and she didn't think I ever even had it. So at that point I wondered if I really had Lupus or RA or one of these other viruses (because I tested positive for all kinds of crap when I was super sick). The last group of tests my GP ran three weeks ago showed most everything negative in the autoimmune family after doxycycline though, which makes me think that Lyme made my immune system go crazy then once it was treated a little, everything went back to normal. Fast forward a few weeks though (now that I am getting further away from treatment) and I am getting symptoms again. New ones that I never had.

That does not support the PTLDS hypothesis.

All this stuff makes me want to do a postdoc in a Lyme lab or advocacy or something - if I ever get better. My PhD is in neuroscience but there's a huge hole in the research with this stuff and something is not right.
Posted 5/27/2016 11:02 PM (GMT 0)
Pirouette, thank you so much for this information. I guess I just wanted to believe that it could go away... I watched most of Under Our Skin. It was terrifying me though and I turned it off. I guess I should've watched the whole thing.

I would never wish this thing on anyone, but they probably can't understand because they haven't been through it. It's nothing short of terrorizing to wake up with something super bizarre happening to your body that is completely different from what you felt several days before. Then again. And again.
Posted 5/27/2016 11:27 PM (GMT 0)

misty51 said...
Thanks, Peteza. I hope this does not go on for the rest of my life. It seems like an awful disease.

Misty it is a horrible disease but there are people on this board that are healing and healed. It is not a quick process. It will take time, patience and money - there is no way around those. But it is our health and we just want to get back to normal.
Posted 5/27/2016 11:47 PM (GMT 0)
totally agree w/ PeteZa - people ARE healing!

I understand the shock of the documentary at first. I was numb and couldn't remember a thing that I had just seen. Watch it again - it's important to know the context of lyme disease--this does NOT mean that your experience will be like those who were featured.

-p
Posted 5/28/2016 12:51 AM (GMT 0)
misty, I'm really sorry to hear that symptoms are appearing again for you.

Recovering is like finding your way out of your own personal labyrinth. Some people go in one direction and get results and claim that the process is straightforward. Possibly that's how their maze was laid out but it's not like that for everyone.

Your brain seems to still work so I'd encourage you to really evaluate the different treatment options rather than just signing your health over to the nearest LLMD.

Here's a quote from a site that has a lot of info:

"Q: So you didn’t work with a Lyme-Literate MD (LLMD)?

A: Nope. We really didn’t work with any LLMD. Their success rates are 30-40%. As an engineer, if I’m unsuccessful more than 50% of the time, then I’d be fired. Yes, Lyme is not easily treatable with one pill, but I still challenge them to do better. Furthermore, I see patients coming out of our local LLMD practice bankrupt and sicker. Heart. Breaking. My success rate on our family is 4 people out of 4 people. Without a LLMD, mostly on our own, and all the details are above under Chronic Lyme Disease Cure. A quote from Dr. Lee Cowden (LLMD) in his ACIM training flyer “…Active patients tend to heal faster and more completely than passive patients…”"

www.debugyourhealth.com/
Posted 5/28/2016 8:07 AM (GMT 0)
Hi Misty, I think I can speak for just about everyone here when I say that we all have felt the way your are feeling with the fear that being sick for a long time with this illness can make us feel. I dont want to sugar-coat and say it will be easy but you CAN surely get better and it not be a life sentence of feeling how you are feeling. Not to sound cheesy, but a positive attitude truly can go a long way. Make sure to look around and continue to count the blessings you do still have and just know you HAVE to keep fighting until you reach the finish line. Simply put, your life is worth it.


Its awesome you made the appt to the llmd. Please remember, you "gotta get worse before you get better" when healing from lyme and co-infections. For that reason it makes it so much harder sometimes. Most people are so accustomed to going to the doctor to get a prescription to start to feel better in about a week but unfortunately its not like that when you go to see the llmd. It really depends on how high your bacteria load is but once the antibiotics are started, even more symptoms can surface and that can be really discouraging. Im not telling you that to scare you in anyway but surely just to prepare you so you can handle it better and know what to expect.

Actually, I just thought of this link I am going to provide. It *REALLY helped* me alot to break things down in the beginning. Please take the time to read through:
www.angelfire.com/me2/StarShar/Herx1.html

If you havent had lyme or co's for very long, I have heard of some people who just start to 'fee better' when they start their antibiotics...lets hope that may be the case for you! Just remember, even if that is the case...still do not stop treating until you have been clear of all symptoms for at least 2 months. (Take it from me, I was getting better and I made the mistake of stopping treatment too soon :-/ )


In the meantime before you see your llmd, I would suggest you try bring down your inflammation levels. This in itself could make a major difference in how you feel overall-physically and mentally. Many of our symptoms can be from our bodies immune system in overload trying to fight something that is too tough for our immune systems to eradicate hence causing inflammation and symptoms. Lyme and co-infections are very inflammatory.


Also, you have probably heard about detoxing alot on this forum and that is for good reason. Def make sure to detoxify your body as much as possible when you are treating the infections with antibiotics or any other antimicrobial agents. You can actually start detoxing now prior to your llmd appt and that can help your body be more prepared for when you do start killing off stuff with the antibiotics your llmd prescribes.
This is one of the best sites for detox tips:
www.tiredoflyme.com/detox-methods.html


If you go to the 2nd page of "New to lyme-start here" at the beginning of this forum and scroll down you will see some links for some success stories of people who are healed from lyme. I personally always LOVE to read stories of when people are healed as it serves as a reminder that we CAN get there.


I wish you all the best in health Misty!

xx's-Courtney
Posted 5/28/2016 2:10 PM (GMT 0)
I just wanted to write back really quick while getting ready for a baby shower (it's amazing I can even do that) that I am so so thankful for all of your help and soothing words. All of the advice, Project, Courtney, Peteza, Pirouette, Traveler. These are really great tips and such helpful and kind words. I will check out those links. I was very frustrated yesterday -- I still am because I'm in pain but thanks for making me feel like all is not lost.

It sounds like there are a few options to decreasing the problems and pain now until I am in the real solution (which sounds like it is not cut and dry). I just started reading Debug Your Health (she sounds on the ball), Project, and will also read those links, Courtney. You guys are too kind.

You never feel like anything crappy like this will ever hit *you*....that is, until it does...

Thank you for paying it forward.
Posted 5/28/2016 2:24 PM (GMT 0)
Misty, honestly I never thought I would ever be sick. I was such a very healthy person.

For such a dinky small tick to do this is unbelievable. I would have never imagined this - ever.
Posted 5/28/2016 4:14 PM (GMT 0)
I don't remember ever being healthy, as I was infected at the age of 7, diagnosed properly at age 44 and found the right protocol for me to heal at age 47. I healed very well, then had too much stress in my life, and my adrenals came crashing down, taking my thyroid and my immune function with it - then I got reinfected with these infections yet again, so I'm back in treatments.

Each of our journeys is unique, but we have enough similarities that in a community such as this, we can usually find others with similar circumstances and find leads on things that might help us. We try to keep this community as one that reaches out and helps each other, so I hope you find that to be true - it's really the only way this works - that we keep helping each other.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, 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), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum. You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum:
https://www.healingwell.com/community/default.aspx?f=30&m=1606610

And this is another good list of possible detoxing routines: http://www.tiredoflyme.com/detox-methods.html


b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​
✚ New Topic ✚ Reply