Never Really Cured from Lyme

Hello - I was DX with Lyme in 2009. I received treatment until around mid-2012. I stopped all treatment at that point. I did not pay much attention, but little symptoms things crept back in.

Now to last week... I had some left-side abdomen pain and the next day, my legs stopped working properly. Left leg and abdomen were uncomfortable to a light touch of the fingertips while my right leg became very weak, where I dragged it while walking. I had been out of touch with my LLMD since June 2013, but called him and he instructed me to go to the ER. They performed a CT scan and ruled out stroke and tumor. I told them I was a chronic Lyme patient and they suggested I revisit MS (I've heard this before!). The day prior to the ER I was prescribed an antibiotic for possible colon infection. I believe that helped me get better through the days. Anyhow, went back to LLMD yesterday and he prescribed four antibiotics and ordered an MRI. I am doing MRI at noon today and will start antibiotics this evening.

This morning, I awoke with double vision that lasted for an hour and a half. It scared me, but I reminded myself that Lyme is unpredictable and that this is likely the cause. I don't really have a question... I just think we all need to be mindful that if symptoms creep back in, it's time to go see the doctor. I ignored many things and it seems that they finally got the best of me.

I'm sorry to hear that you feel unwell. What is MS?
I hope your Lyme will be soon under control. You have a good LLMD, that is important.

I so hear you mokeyho - I keep finding myself in this vicious cycle and when I look back I'm like "what's wrong with me!? Why did I ignore all of these symptoms!?"

I've improved twice, and somehow, someway, managed to get sick again.

Peteza - don't worry, just learn from our mistakes! Maintenance is so, so much easier than letting it get horrible then retreating.

I think it's just a natural coping mechanism - this disease is so devastating that we don't want to believe that when this or that hurts it's Lyme flaring up, so our brains act like idiots and tell us it's nothing, it's nothing, it's nothing.

Hope you feel better soon, mokeyho!

It's those darn persister bacteria. Not sure if you did this, but pulse dosing appears to catch a good amount of them. Hopefully enough for the immune system to take over. Good luck and hope you get a speedy remission! Let us know how mri goes.

Oh and now my teeth hurt. What the heck?!?

I quit cold turkey all antibiotics in 2012. I had another illness crop up and I felt like I had enough medical intervention at the time. It wasn't my best decision. There were never really any plans to wean me off... I just said I feel fine and that I hadn't had symptoms for quite sometime and that I was done taking medications. So this time I will listen to what my LLMD tells me to do. Sometimes I just have to learn the hard way. :(

Yes. I left off on amoxy, so I guess that was my maintenance dose. For some reason, I felt I couldn't tolerate doxycycline... it made me sick everytime I took it. And I believe that is because I took it with milk and no food. It's my LLMD's preferred antibiotic. So I told him I would deal with it. He said I could take it with food, so now I'm taking it with food and I'm fine.

I don't mind sharing at all. :) He's treating me for Lyme, Babasia, Bartonella and Mycoplasma. I've never heard of mycoplasma, but he wrote that down in my record. He wrote treatment: and then listed them numbered as 1 through 4.

The medications he prescribed are:

ATOVAQUONE (Mepron) 750 MG/5 ML SUSP: 1 teaspoon twice per day
RIFAMPIN 300 MG CAPSULE: 2 capsules daily by mouth (I take these at the same time... how else would I take them if not by mouth?!? :))
CLARITHROMYCIN (Biaxin) 500 MG TABLET: 1 tablet twice per day
DOXYCYCLINE HYCLATE 100 MG CAP: 1 capsule twice per day with calcium (not sure what this is about. Does this mean Milk?)

I've detoxed only once so far. I wonder if my double-vision/out of focus left eye is a herx reaction. What do you think? I've never experience double-vision, though my left eye has felt "weird" for over two years... I'm always pulling the eyelid away from my eyeball because that seems to make it feel better. And every so often, the inner corner turns red and burns for no apparent reason. I guess these are other symptoms I just ignored. Thank you so much for writing to me. :)

Hi Cheetahjade - The little symptoms were what I call electrical shock sensations in my feet and sometimes they make my leg jerk. I've also noticed a slightly crusty nose, which means it has a really slow drip and also that I've been carrying a tissue in my pocket lately. That was a symptom that did go away with my first time around. I've had a weird feeling in my left eye for over two years that is now starting to feel better now that I've started treatment. And I was obsessively picking my face, which I just noticed this morning that I haven't been doing. Those were the "little" things. I also had two major brain malfunctions in the past year that were pretty scary to me... I couldn't remember how to get to my son's school and on a separate occasion, I couldn't remember how to get home from the grocery store. So I've been using my waze app everywhere I go because I was afraid of the confusion. I don't know why I didn't believe it was the Lyme and instead assumed it was something really bad with my brain, but I was too afraid to get checked out.

What you are experiencing in your second paragraph is what happened to me last week. I had abdominal pain, a weak right arm, a weak right leg and off sensations on my left side starting right under my breast down to my foot. My LLMD did tell me that touching my skin and feeling like I'm bruised is a lyme symptom, not MS. He also said joint pain is Lyme.

MS... There are three of us in my teenage crowd that were diagnosed with MS. It seems statistically high. We all hung out in the woods to drink beer and party. I told both of them that I was diagnosed with Lyme and that maybe they should see an LLMD, but it seems that people often want to stick with the diagnosis they receive. I was initially told MS, but I researched and pursued Lyme and was remarkably better after just a couple of weeks of IV antibiotics. MS always comes up. Even though I told the MRI people that I have been treated for Lyme... they referenced MS with statements such as "lesion on the brain are consistent with MS" in the report. When I went to the ER last week (LLMD told me to just to rule out stroke, but felt it wasn't since both sides impacted), I told the ER doctor I have Lyme and I'm not clinically diagnosed, but it was found in my spinal fluid, she told me to revisit MS.

Good luck to you and let us know what answers you get from the LLMD. Also, try to make a list of everything, no matter how insignificant it may seem. My left ankle would swell for no apparent reason, I had low grade fevers, sore throats and a drippy nose for years. I just learned to live with the small things. But when I went numb on the left side of my body 7 years ago, that was too small to ignore.

I am amazed that you can start with four antibiotics at the same time. I truly think that if I were to do that, it would be the end of me....Anyway from my reading, the MS drugs seem to work best if you take them earlier in the course of the disease. You could have MS and Lyme. If you haven't already read Horowitz's book with an explanation of this phenomenon, you really should. Book is called "Why can't I get better?"

I agree that there are multiple factors that cause MS (as has been suggested for ALS, Parkinson's, etc.) and that bacterial infection (likely connected w/ Bb and coinfections) is a much more common cause than the medical profession wants to admit. Fear regarding abx is one driver and fear of being wrong is a bitter driver. It will take a cultural shift to fund sufficient research into this but hopefully it will eventually happen.

My MDs initially suspected MS. When MS meds didn't work--I'd turn directly to a lyme & co dx and protocol. How could you prevent someone from turning an MS dx on its head by trying out a couple of abx courses. It's criminal---more people suffering.

-p

Girlie -
Totally agree. I've read in multiple sources that there are no definitive tests for MS--that it's a clinical dx more than anything else... and I've read that about a LOT of those "life-long sentences) is that they are often clinical diagnoses... which then begs the question - why are clinical lyme & co dx so suspect????

Your post just made me realize that I now have baseline tests like MRI and EEG and other scans. For a long time I've been worried about brain damage (a lot of my infection is in my brain). When I first started tx I'd asked my LLMD if I should pursue some testing to find out if I had damage and she didn't think it was something insurance would cover, nor would tests tell me if lyme & co damage was permanent... and if there was any other kind of damage (other than the permanent kind) it wasn't useful information and only adds stress. I was OK with that response.

But then a couple months ago I started having blackout seizures, dizzy spells, disorientation so she sent me to a neurologist (who was fairly lyme savvy and overall great). He did a full workup and of course, found nothing at all except sig hearing loss in my left ear. They told me I had a "young" brain for my age due to good genes (this made me feel better cause many other genes are not-so-great). They were about ready to start me on epileptic meds, which stressed me out but then, the seizures stopped (as has happened before) so they decided to wait and watch. Whew!

Anyway, your post just reminded me that I now have a baseline for my brain function. A good thing to have.

-p

Autoimmune whatever is the body trying to get at the pathogen in wherever. ...i hate having to be careful too..it feels like im 80....cpn a coinfection is implecated in ms btw. ..similar treatment...see cpnhelp.org