posted
Long story short - I tested positive for lyme and borderline bartonella with 99% of my symptoms occurring because of toxins in my brain, and then the front part of my brain shut down completely, in addition to pain inside my neck at the base of the head.
1 -
Several months ago, I became so toxic (and significant cognitive issues) that when I tried detoxing with some supplements, I became very dizzy. Then, the front part of my brain completely shut down. Essentially, my working memory has been "shut off." It happened in one moment (it was there, and then gone). It has been shut down ever since - I could go through the list of cognitive issues. Lots of different sources / research confirms that the prefrontal cortex / working memory is the first to be effected by toxins, and it can enter "electrical shut down."
Has anyone else experienced this? I guess I'm just looking for someone who has experienced this and to know that it can actually get better, because at this point (especially on Tindamax, which is making me depressed) I am fearing the worst. I haven't heard of anyone having such severe cognitive issues.
2 -
Anyways, I did something really stupid and kept trying to use the front part of my brain - and when I kept failing to do so, I started just moving my facial muscles in that area (imagine making the "thinking" face every couple of minutes for a few weeks straight).
Well, at first I didn't notice it, but eventually the front of my face became partially numb, and I started to feel a tingling sensation throughout as if there was hair on my face. Also some burning pain. This was after weeks of doing this.
So, I stopped what I had been doing (yes, I know it was dumb, but it kept me going and made me feel like I was making an effort to do something) and the pain / tingling subsided after 3-4 days. That was over a month ago.
The problem is that now, whenever I start Tindamax, after 2 days on it I start to get the painful, burning sensation in my face. It has nothing to do with the lyme (I caused this all on my own) which to me sounds like nerve damage? Its 100% not a herx.
Is this nerve damage? Has anyone else experienced already damaged nerves being hurt further my Tindamax / is the damage from Tindamax really that bad or could it go away in a few days after stopping? I can't really stop the Tindamax as I need to be on a cyst buster and plaquenil didn't really do anything for me.
3 -
Anyone else feel the lyme act up an hour or so after eating a meal?
4 -
Although I am positive for lyme, I am not positive for bartonella, though the test was apparently close to positive. Anyone else have a negative bart test but actually have bart? I don't have any of the physical symptoms of bart, but I have the cognitive symptoms? Then again - few physical lyme symptoms (none that bother me) but clear cognitive symptoms and positive test.
My lyme doctors all agree on lyme but not positive about bart.
Thanks again and sorry for the long post.
Posts: 69 | From NYC | Registered: Apr 2015
| IP: Logged |
posted
I have been in treatment for eleven months.
Bart was a possibility for me and I was clinically diagnosed.
The more typical bart symptoms did not show up until about six months into treatment.
I started getting pain on the bottom middle of my foot, and shin pain.
I have recently been getting dizzy, but I don't know why. I find it harder to concentrate now, and understand certain things.
However, it sounds very severe for you. I don't know much about this myself. Other people are more read up than me.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
See this quote from p. 15 of Burrascano Guidelines. It is talking about flagyl (metronidazole), but Tindamax (tinidazole) is in the same drug family and can produce the same side effects, so it is very relevant to your case:
"Flagyl can be irritative to the nervous system- in the short term, it may cause irritability, "spacey" feelings, etc. Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc. If mild, a change in dose may be required. Often, extra vitamin B can clear these symptoms. If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting."
So, Burrascano is recommending that you lower the dose of Tindamax and take extra vitamin B. If that does not get rid of the numbness, then you must discontinue the Tindamax. As Burrascano says, if you don't discontinue it, the numbness could be very long lasting.
There have been some people who have posted on LymeNet that the numbness from these meds lasted a year or more. So, this is serious. It is so serious that some lyme doctors have stopped prescribing these 2 drugs due to the possibility of these long-lasting side effects. So, treat this seriously.
See this webpage that says numbness is a serious side effect of Tindamax:
I really do not believe you caused the facial numbness by what you did. I think it was just a coincidence that you got facial numbness after scrunching your forehead a lot. I don't see how you could have harmed yourself with that behavior. Not at all.
Probably, the lyme was continuing to progress and that is what caused the neuropathy on the face. The feeling of having a hair there, etc. and the numbness are all neuropathies.
Since the cyst buster meds can also cause these problems, you need to try what Burrascano says.
Also, regarding bartonella, many people have bart and don't have a positive test. See what happens when you treat bart. If you herx or notice you feel better, that is the proof that you have bart. Also, if any symptoms go away with bart treatment, then that is proof.
The coinfection testing is very unrealiable, meaning that it misses a lot of cases of bart, babesiosis, etc.
Regarding lyme acting up about an hour after you eat, that sounds exactly like the poster Spiritwalk. See this post where his doctor diagnosed him with mast cell activation disorder (MCAD) based on this symptom.
Finally, regarding your severe cognitive issues, I have known a number of lyme patients with very severe cognitive issues. Yet, this all went away with good lyme treatment. So, don't despair.
The cognitive issues generally are thought to be caused by lyme inflaming the tissues in the brain, thus causing less blood to be able to flow through your arteries feeding your brain.
Once you get the inflammation to subside, normal bloodflow resumes and your brain function comes back to normal. You can't think normally without enough blood to your brain.
Are you on any supplements to reduce inflammation? If not, perhaps you should ask your doc to recommend some. See page 29 of Burrascano Guidelines where he lists the supplements that help cognition.
I suggest you go on as many of these as you can. The brain is the central nervous system, so try to get the supplements that are good for that: green tea, Cordymax, and METHYLCOBALAMIN (Methyl B12). Also CITICHOLINE.
Please let us know how things go with you as you make additions/changes to your protocol. Especially in the cognitive area. I trust that Burrascano's suggestions will help you!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Tindamax can cause nerve damage.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to see the excellent replies above.
There are ALWAYS other ways to approach any puzzle. No point in risking damage for something that is clearly causing you such profound effects.
As suggested, lower the dose (maybe skip a day or two until it settles down and start back with just a tiny, tiny dose and a good balance of B vitamins (take with food - some B's can be hard on an empty stomach - B12 to melt in mouth, though, as it does not work well through stomach).
If that works, great, if not, stop. Always some other way to approach the issue even if not apparent to you right now.
Be careful with B3 - niacin. It's best included in a B complex. Some forms of this, especially if taken separately (or too high a dose) can cause flushing of face, burning, and very sudden hot flashes of major intensity.
Some "energy drinks" contain high amount of B3 / niacin so the consumer feels that rocket fuel effect. Some like it (still not good for them) but, for some, it can be dangerous. Steer very clear of all things that promise energy or a boost. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This part seems unclear to me. How did you cause this on your own? Are there creams or other things you've put on your face that started this?
You say: " . . . The problem is that now, whenever I start Tindamax, after 2 days on it I start to get the painful, burning sensation in my face. It has nothing to do with the lyme (I caused this all on my own) . . . ." (end quote).
How did you cause "this on all your own"? After repeated Rx usage, for this occur, sure seems connected to the Rx but if you are using any products on your face, do question those.
Or sun exposure? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic