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CNS Lyme and Abnormal Brain MRI - scared

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Posted 7/23/2015 2:21 PM (GMT -5)
I'll start off with my test results

Igenex Results
IGM Igenex Positive, CDC Negative
31+++
39 IND
41 ++
83-93 +

IGG Igenex Negative, CDC Negative
39 IND
41++

mycoplasma pneumonia, hhv6, EBV reactivated virus. no other "known" co-infections.

Prior to being DX with Lyme by my LLMD, my neurologist wanted to run an MRI after I mentioned to her that I was a suspect for open angle glaucoma since age 26 (the last 6 years).

The MRI findings show that I have retrobulbar optic neuritis, in both eyes, but no vision issues, no eye pain, rarely get headaches. Cyst in my sinus, also some inflammation on left temporal lobe, but it is not "specific lesions" as the way MS looks. She is stumped.. She wants me to get a LP to rule out MS - I am afraid to do that, considering I have been having back pain since March. I went to an MS specialist, she said based on the MRI findings and physical exam, she does not believe that it is MS. She has also ruled out NMO and Sarcoidosis based on blood tests. She said "if it is lyme, then it is central nervous system lyme, which Bactrim won't penetrate the BBB, you would need IV". She didnt say what else it COULD be...

I am in the process of waiting to get in to see a University Style Hospital doctor to find out more about whats going on with my brain findings. What worries me is the hospital will probably want to do the LP... my LLMD does not think LP would even show lyme. So, if the LP necessary? what else is left to check for?

My LLMD did not tell me CNS Lyme when he DX me, only Lyme, but when I called him back to ask him about it, he said "why yes, that's what I am treating you for". He has not really given me too much to work with and i've been left to the internet for my answers, which is NOT always a good thing..

Can anyone share their experiences with CNS lyme, or abnormal brain MRIs? am I wasting my time with neurologists? What happens to Optic Neuritis if left untreated?

I have spent the last few weeks feeling very anxious and tormented by my thoughts, did i make the right decision, did i pick the right doctor... so instead of lurking on the forums, i am finally posting.

Do my test results "look like" cns lyme? Has anyone heard of treatment for CNS with oral Bactrim DS? I am not finding much on the web about it, and im wondering if I have started my treatment journey with the wrong antibiotic. My doctor did not tell me how long I will be on this, or what the treatment plan is. I have a 1 month with 1 month refill, but dont see him for 3 more weeks.

Feeling alone and scared.. Thanks.
Posted 7/23/2015 2:26 PM (GMT -5)
Why did she give you Bactrim? That's not the right drug for Lyme.
 (At least not by itself.)


Yes, you are wasting your time with neurologists. Why are you seeing neurologists if you already have a LLMD?

Posted 7/23/2015 2:31 PM (GMT -5)
my LLMD gave my bactrim, after being on ADP for one month, thats why I am so confused!!

I started seeing a neurologist before I was able to get in to see the LLMD - now that the brain MRI came back with findings, I have been trying to seek out answers in relation to that. I dont know if I should continue to seek out answers from neurologists, but my LLMD didnt seem to concerned about the MRI..

Now I feel like I was put on the wrong med by the guy who is supposed to know what he is doing, and im just COMPLETELY baffled... I even called the LLMD to question the bactrim, and he said he gave it to me to treat CNS lyme... someone please help explain this to me, or tell me if I need to find a new LLMD... I was recommended this one by ILADS and a friend who has been seeing him for 10 years.
Posted 7/23/2015 2:42 PM (GMT -5)
Yes, you are wasting your time with a neuro. I spent a year with a neuro then wasted almost another year with a rheumy. I had a mix of strange nerve pain and joint pain.

I spent another year with my first LLMD, making little progress, then switched to a new LLMD who treated co's more aggressively. Some get well just on oral ABX, other need IV, and others do better on herbals. The only positive test I had was a spect scan, that detected brain function issues "consistent with Lyme Disease". My MRI was normal.

You at least got a positive IgM western blot. And are in seeing an LLMD.
Stop spending time and $$$ on more tests, and save it for treatment. It makes little difference what type of lyme you have. Bart causes similar neuro symptoms.

How long have you been taking Bactrim DS? Normally an LLMD will use multiple abx protocols. Ask him more about his treatment plans for you at the next appointment. Then if you're not comfortable with his plan, look elsewhere for treatment, but don't leave him until you find an LLMD you feel comfortable with.
Posted 7/23/2015 2:49 PM (GMT -5)
OK so...in general, if you've had Lyme for a long time, it's CNS Lyme. CNS lyme does not imply that it's somehow worse. Most lyme affects the CNS.

Don't worry about the neurologist or "university doctor". I am however, skeptical of this LLMD that gave you Bactrim. I have never heard of Bactrim alone being given for Lyme. I've heard of it being given along with other drugs for Bartonella. Do you also have bart?

I'm not saying it won't work, I don't know if it will. Is there a reason he didn't give you something like doxy?
Posted 7/23/2015 2:52 PM (GMT -5)
Thanks for your reply Tickbite - I saw 2 rheumatologists, an orthopedic and a pain management specialist - I feel like I am leaving some out... all in the last 4 months. DX with Fibromyalgia, but I never bought that as the final answer - too many other symptoms were not explained. I have that same nerve pain and joint pain, on top of lots of brain fog (and the classic fibro trigger points, im tender in almost all of them).

I started Bactrim DS on July 6, so I am on week 3, like I said, he wrote script for 1 month with a refill.

What else have you seen paired with Bactrim, to treat lyme? I am starting to really worry I am NOT on the right RX. Before I saw my LLMD I had an ND give me 2 week supply of Doxy (100mg 2x day), but from what I read on the forums, that is not enough, and I decided to go with the RX from the LLMD. Do you think I should have started with the doxy instead? I was on doxy for 10 days a year ago for a deer fly bite (thats when my health began to decline)
Posted 7/23/2015 2:59 PM (GMT -5)
I still don't understand why the LLMD didn't give you doxy at the correct dose, which is 200mg 2x a day I believe.

I've seen bactrim combined with azithromycin or clarithromycin.
Posted 7/23/2015 2:59 PM (GMT -5)
Sarah - sorry didnt see your reply! I did not question the LLMD when he wrote the RX, it was more so days later when I could not find ANYTHING about bactrim treating lyme that I began to feel uneasy.

This LLMD has mixed reviews, mostly bc he is not a "people person" and Im worried that I am going about this the wrong way. I dont know if Bactrim and Oregano Oil together do anthing special - that is what the ADP is made out of.

I was bit at age 12, never had lyme symptoms, but stomach issues ALL of my life - Deerfly bite July 2014 - 10days doxy due to what my leg rash looked like - no thought of lyme back then - it wasnt until March of this year I woke up with stiff neck and bascially went down hill fast from there.

is it possible that the LLMD did not want to put me on Doxy bc I was on it last year? not sure..

I dont notice much change being on bactrim other than being really tired and brain fog seems worse. some days im really dizzy. been dry brushing and showering in the AM, foot bath detox baths in the PM - I tried one bath tub detox bath, but due to being so under weight, the bathtub is extremely uncomfortable to lay in, even with a towel under my butt.
Posted 7/23/2015 3:12 PM (GMT -5)
3 weeks is not that long if you have been sick for this long. I took Bactrim for a spell when it was added to a zith/mepron combo while hitting Babs, and also on IV Rocephin and pulsing tindamax. Yes all at the same time, but I had to work up to it slowly adding one at a time.

I started out with first LLMD with Biaxin/Plaq, My second LLMD started me on Zith/omnicef.

What probiotics and supps are you taking? You need liver support, and must take a good 10 billion or more culture probiotic.
Posted 7/23/2015 3:19 PM (GMT -5)
I have been taking a 30billion probiotic - I tried taking it twice a day, but im lucky if I remember at mid-day! I forgot today... darn it! going to take it now then just push back dinner 2 more hours... also drinking GT's Kombucha & randomly Bubbies Pickles (fermented).

the schedule i TRY to stick to
Breakfast around 9am ADP & ABX
Lunch around noon ADP
2 hours later Probiotic
2 hours later or more Dinner ADP & ABX
Bedtime ADP

I ordered 2 supplements recommended by the ND, they should arrive next week, to help me sleep and help get me through the day - Calm-G and Calm-PRT, just to see how it is, to maybe get me through the next month and my anxiety is over powering lately.. I just dont know what to do anymore, and all of this conflicting info is just making it more confusing.
Posted 7/24/2015 6:35 AM (GMT -5)
Just a few important supplements you should consider and discuss with LLMD.

1. Milk Thistle for liver support
2. Magnesium,
3. Vit D3
Posted 7/24/2015 9:42 AM (GMT -5)
Hi eagle0eye

You've had some good responses already… just wanted to share a few additional thoughts—

Make sure you have no sensitivities to sulfonamides (Bactrim) and you don't have low thyroid function.

"DX with Fibromyalgia"
You've probably already realized this, but fibro is simply a name for SYMPTOMS that MDs don't understand the underlying cause of, and big pharma was able to develop drugs they can target for sufferers (which don't work for most people). So, like with the rest of western medicine and their allopathic approach to treat sx not causes, it's a very dangerous bandaid. You're very smart to look deeper.

And I agree that the neuro is only going to look so far and no MD will be able to see the full picture but a lyme specialist. And, unfortunately, many MDs are starting to call themselves specialists who shouldn't. If one LLMD doesn't do it for you—find someone else.

Totally agree with the milk thistle and also try burdock root for liver support. Together, these two have kept my liver enzymes low through a LOT that I'm throwing at it.

And if you start having GI distress, I'd double your probiotic (60 billion is not that much when you're on our kind of tx).

-p
Posted 7/24/2015 9:55 AM (GMT -5)
In Europe ..a.t least in the past they combined Bactrim with Roxithromycin (not available USA) ..and that was said to be very effective in late stage Lyme... did the doc forget to add another abx to your treatment?
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