My problems are pretty much all in my brain. Quite frankly, it seems like I have armies of the bugs living there and not even one moving on out! I have gotten no relief AT ALL from these symptoms (brain shocks/zaps when trying to fall asleep, constant drunk/drugged feeling, total loss of executive function, short and long-term memory loss...and the list goes on!)! My entire body feels beyond terrible every single day! This has been going on for over a year now with no change really!
I would just like to know and hear some cases of folks that have had my types of similar symptoms...and for a long time...mostly neuro, with little to no joint pain or fatigue...that have gotten better! I need to have a little hope that it is, in fact, possible and that this won't be permanent and have to live with this for the rest of my life!
Thank you so much! 'Just really struggling lately...
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Yep...treated babesia for two months maybe...I forget now...with mepron...and bartonella with a month of rifampin several months ago and eight weeks of cipro/bactrim recently.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
i responded to your "any athletes out there" post and can certainly relate to you. I am still waiting for my Igenex to come back, hopefully I will hear next week. I have brain lesions and everything else has been ruled out. I also have no pain or fatigue, although I crash very early in the evening. My CNS symptoms are tremor, anxiety, and memory. I also think somehow the CNS issues are related to my heart issues. I am too aware of my heartbeat. I just want my previous life and routine back. I want to wake up and hit the running trail. I had the "shocks" when this initially all started with a horrible flareup in '09. They haven't really been an issue since then but I remember how unpleasant they were. Do you have these routinely?
Posts: 478 | From Third Coast | Registered: Feb 2011
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Yes...unfortunately, I have had the nightly brain shocks EVERY SINGLE NIGHT for over a year now! That's why I am so concerned that since it has gone on so long, that it has become irreversible! OMG! I hope not!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I see we both had onset of symptoms around the same time, I was 9/09. I also had ER visits and tons of MD visits. Found a lyme knowledgeable MD and am just waiting for my Igenex results. I had those shocks at onset. I really think wherever my brain lesions are located are somewhere to do with heart function. I distinctly remember a horrible shock in my head, and then a few minutes later a heart rate that went up to what seemed like 200 (yes, an ER visit...perfect EKG). Have any meds been suggested that may help with this, like perhaps Lyrica? I soooo want to have my very physically active life back. At this very moment I am contemplating a walk and then I have to try to hit the gym to do weights. Last time I tried weights in January I had the shakes and heart symptoms. Maybe this time I will try lighter weights. I feel so pathetic.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Yes--i've responded to you in the past about this that I couldn't add, read or anything and completely regained my brain function with IV Rocephin....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Bugg, How long time required did you regain your brain function?
Posts: 182 | From turkey | Registered: Jan 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Two months of babesia treatment is not enough. It take four months for the red blood cells to turn over so the minimum treatment is 5 months.
If you have babesia duncani, it can take much longer to get rid of it. You need to treat the babs much longer. It causes many brain functions problems including the drugged/drunk feeling.
Do you have depression lack of motivation, loss of stamina or fatigue? I never had drenching sweats or fever so don't rule out babesia if you do not exibit the classic symptoms. I did not even get the air hunger but occasionally and just dismissed it.
Most of my babesia symptoms were loss of memory, inability to concentrate (feeling drunk), no stamina and no motivation. It was not obvious depression at fist - just apathy.
As things got worse I plummeted into despair,. I had no stamina, breathlessness, dizziness, feeling completely out of this world (drugged), tired. The hot flashes I attributed to bartonella suddenly came with sweating.
What I have learned is never just go on and on with the same treatment fighting one infection. There is always something else present.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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chiquita incognita
Unregistered
posted
Hi Tri I had not shocks exactly, but I did have the most horrific all-body sensations going on that caused shakes and overwhelmingly horrible feelings like I would be swallowed up by some electric generator-type nightmare.
I also had severely elevated agitation, I thought I could jump off a plane without a parachute or do something else crazy, I was afraid I would run mad and crazy. (It did not happen and I was able to carry on. The spirit is STRONG!!)
No joint pains et al, but lots of short-term memory loss yes.
I want to report to you that that severe agitation, and the electric generator-type feelings, are GONE!!! I don't have them *almost* at all anymore.
I will take exception to this with one statement. Keep in mind that I am more sensitive to medications than most people, so I had a truly horrible experience and got a bad setback after using....drumroll....abx! Bactrim, in my case. God I was ill, not just sick, and two months later I am still recovering! This set me back only a little bit with the electrical generator feelings. But only a little bit, to stress.
What got me out of the woods was about three months of herbal therapy. I was on the herbs for six months fyi, but it took about three to take the edge off.
Under my doctor's guidance, I was using the Bar 1 for bartonella by Healthy Directions in Rohnert Park, CA.
Maybe you need some other approach alongside the abx?
Maybe you need increased detox protocols to help you along?
Traditional Chinese Medicine regards the nervous system and liver as inter-connected. If the liver is toxic then recovery will be slowed down,because there will be too much tissue toxicity during die-off. Toxicity harms tissues, don't forget (and of course they can often recover).
Let me say that a med school graduate who healed me about 25 years ago of environment and the MS like symptoms that came along with it, said that the nerves are the slowest body system to heal. Slower than bones. Give them time.
There is lots that can be done to help support the nerves. This would be as adjunct to lyme therapy, not instead of it, to note.
You could do a subject search here: www.healthy.net Read about ginkgo, gotu kola, and DHA from fish oils (not DHEA). Ginkgo has even been seen to reverse some clinical alzheimer's cases,and to arrest the progression of the disease in those whose cases were not reversed by it, according to one source I have read. It strengthens the membrane around the red blood cells which transport oxygen and nutrients to brain and all bodily tissues. By oxygenating and nourishing the brain, and dilating capillaries, it helps memory et al. This is according to clinical double blind studies FYI. CAUTION: Ginkgo is a blood thinner, do not combine with blood thinning medications unless under a doctor's supervision.
Also, are you sure that lyme is the only role player here? Are you treating the right problem?
Can heavy metal toxicity be involved? See studies here and which patients recovered after mercury-containing fillings were removed (and detox therapy is necessary thereafter):
Google also "Linda Brocato Testifies for the FDA" this is the true story of a patient who came down with MS after having multiple amalgams put into her mouth, and her partial recovery after they were removed. Her testimony live for the FDA panel is quite powerful. Check it out. (She did not mention doing any detox protocol. It is not clear if she did this, or not).
Note that mercury off-gases as the fillings are drilled out of your teeth and extra protection is required, to prevent re-exposure. I have seen a few protocols but none as protective to date as that developed by Dr Hal Huggins.
Feel free to PM me if you are interested in further info.
Again I don't know if mercury is an issue in your case, only bringing it up as something to investigate.
Recently a friend told me she had read somewhere that lyme and other spirochetes are believed to cling to mercury and that it feeds them. I don't know if this is true but thought it was interesting.
FYI the dentist who removed my fillings, himself recovered in full from Lou Gherig's Disease after his fillings were taken out.
Is there hope? Yes, I should think so, given my own experience and what I have recovered from. Probably lots of it.
Sometimes it's true that we have to "tough it out" But other times, discouragement is a voice to be listened to and honored. IT doesn't mean give up. It means, try another way! This other way is not working. That needs to be respected and if you do, once you find the right road, *For you!* and with the right professional guidance, you will get better. There's hope, my friend.
My LLMD does phone consultations and is very well known. Feel free to PM me and I can give you his contact info, if you want.
FYI I am very selective about who I give this info to. If there is anybody on this forum who I do not trust (only one or two such people so no worries) I reserve the right to withhold the information.
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor. This is not medical advice, your doctor is the only person whose guidance you should follow.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I have been treating this since 6/1/2009. I think it is safe to say that most all of my symptoms are gone with the exception of brain stuff.
I feel that there is a TINY bit of progress with my brain issues. The reason I do have hope is that many other serious symptoms are gone. Things that I never thought would leave. This means the abx are working.
Most recently I have been doing Rifampin (sometimes IV), Levaquin and Tindamax. I believe that my next protocol will be for Babs and that will be what really turns it around. I believe this because of taking Mepron in the past and seeing how much it helped my brain. I didn't continue because I developed additional infections. I will do IV Clindamycin and Malarone for as long as possible.
What I have learned along the way --- Stick with a protocol as long as possible. In the beginning I would switch things up quite often as I am impatient. For example when I started Rifampin, the brain fog was worse than ever. I thought, I'm getting worse, I can't work etc.... It took months before it began to have an effect.
Exercise every day and get as much oxygen in as possible. I try to do this as my meds are absorbing into my system.
Taking 3 meds seems more effective than taking two. That's my personal experience.
Keep yeast under control.
Pray a lot!
One day I'll post more things I've learned along the way.
Don't worry Tri - You and I are in the same boat. We will one day get out and be walking on water. Keep in mind that it takes years to treat this but it is treatable.
Posts: 2232 | From USA | Registered: Aug 2009
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Triathlete, a friend of mine had the brain lesions and she mentioned having flashes of light....can't remember if she mentioned shocks. Anyway, she was treated with IV Rocephin for two months. The MD wanted her to go longer but she "quit". It has been 10 years and she feels she is cured. There is hope.
Chiquita, loved your quote "the spirit is strong"....yes it is, and it made me smile and think, how true!
Posts: 478 | From Third Coast | Registered: Feb 2011
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chiquita incognita
Unregistered
posted
Thanks Koo!
And sorry for such a long rant, you know my style...thank you for reading my long post! And for the friendly comment. I am so glad it could be of help!
Triathlete and all here, I forgot one important mention.
I attended a lecture of a renowned naturopathic researcher/MD. In this lecture, he said that the fats in coconut oil (medium chain triglycerides) are used in epileptic seizure control.
I got the idea from there, to try it out on myself when I Was having the horrible body sensations as described above.
I rubbed about 1 tbsp coconut oil all over my body, from my neck down to the soles of my feet, everywhere I had weird sensations happening. It really worked! It didn't get rid of the whole problem but it surely also helped a lot, like about 75%. Sometimes I Had to do it a couple times per day, other times I could get away with only once a day and only use about a tsp instead of a tbsp. It varied. I just listened to my own body.
I wonder how this might work if taken internally. I did start to take about 1 tbsp per day internally, but stopped later.
And things did cool out at least a bit.
Cholesterol concerns: I have read both sides of the aisle about this and will represent both sides. At the researcher's lecture I raised my hand and asked the question:
If it is said that native islanders who eat lots of coconut, have very low heart disease rates...then couldn't it be because of the fish and omega 3s that they consume? The doctor's answer was no. Because, he said, they tested the coconut oils on Americans too, and no cholesterol spikes were seen.
Then again, I have read writings by naturopaths who think that coconut oil can spike cholesterol.
Yet many other naturopaths chime with the "yes it's safe" camp and according to recent testing, they have not seen it be an issue.
The reason: The "pro" camp says that the fats in coconut oil are medium chain, not long chain. This makes them more digestible and therefore less prone toward clogging the arteries.
For anybody who is concerned, I say check with your doctor and follow his/her advice. And by all means, if in doubt take the protective view.
For myself, given the nerve symptoms, I am inclined to put myself back on the coconut oil and yes, for internal use.
Topically should not be a problem in my best understanding, because this would bypass the liver et al.
To be sure, check with your doctor.
The above statements have not been evaluated by the FDA and do not diagnose, cure or prevent any disease.
posted
PS are you magnesium deficient? My LLMD said that most lyme patients are.
I use the Magnesium Glycinate by Metagenics (www.vitacost.com)
The glycinate version is less laxative than the citrate or other versions of magnesium
Epsom salt baths----strong ones----may be of some help at least residually because the magnesium from the salts soaks into the skin.
If you can do 10% here, 10% there, before you know it you are up to 50%. Then time takes care of more, and before you know it you are up to 85%, then....
I can't make promises to anybody, but will say that I am encouraged by my own progress in the past with environmental illness and having seen MS symptoms go away. Again nerves take more time to heal than any other body system, but they can.
I don't think abx alone will do the whole trick, neither do I think supplements alone will. I think both are necessary, one to disinfect and the other to build up nerve tissue. But you should ask for your doctor's opinion about this.
Magnesium Ginkgo Gotu Kola Coconut oil Fish oils (EPA is nerve anti-inflammatory, DHA builds nerve tissue. I recommend Nordic Naturals, tested by third party at 0 parts per billion mercury, PCB's et al) Lecithin, a major component of brain material, more than 80% as I recall (see Earl Mindell's The Vitamin Bible of the 21st Century for details)
Have you tried homeopathic avena sativa? This is a good nerve calmer. Try also Hyland's homeopathic blend called Calms Forte.
Daily oats can, over long periods of time, help to calm nerves unless you are gluten intolerant. Lots of gluten intolerant people can still tolerate oat gluten, but some can't.
Then there's also topical St Johnswort oil, contains flavonoids that are nervous system anti-inflammatories. Internally, St Johnswort will interfere with the effectiveness of many mainstream drugs, check with your doctor or pharmaciast before consuming internally.
A strong lavender oil is high in anti-inflammatory linalool and also can be helpful topically. I used the Hauschka Talma Moore Lavender Oil with success, topically. Coconut oil was even better for me though.
We all respond to different things. It's not intended that all the above be used, only keep going to see what works best, for you.
One more helpful tool in my kit: Orange blossom water. Very nerve calming, anti-depressant herb. Tastes incredibly delicious in sour cream with honey and strawberries, mmmm mmmmm go to heaven and melt in a cloud of bliss! I put about 1/2 tsp into a quart of chamomile tea and found it calmed the agitation/electrical feelings a lot.
Orange blossom water (available at Middle Eastern specialty food stores) and coconut oil were the best in my tool box, but I wouldn't under-estimate SJW oil either so long as you aren't taking it internally. Again people respond to different htings.
Take care!
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor. This does not substitute for medical advice, your doctor is the only person whose medical advice you should follow. This is for your education only and to be asked as questions, to be answered yea or nay by your doctor.
posted
I had the brain shocks for a few nights. It's all 100% anxiety, even if you don't feel you are that anxious. Once I learned to just calm myself and stopped thinking about them they went away. Good luck.
Posts: 306 | From NY | Registered: Sep 2010
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Sucks dont it? I've been dealing with mainly neuro/brain issues for the past 6 months or so. Alot of my physical stuff is gone (flu-like,bradycardia,weird chestpains,breathing issues etc.) Im dealing with stiff neck,some anxiety, issues with stores,driving (sensory overload i imagine)
I got fairly well back in 2009 with mino/biaxin and the llmd i went to didnt prescribe any cyst busters. Got off meds..relapsed .l got back on meds..got better but i know ill be in a never ending cycle without a cyst buster..maybe ,maybe not. I dont have endless amounts of money to switch docs ,do endless tests and get fed more abx which i dont wanna take longterm anyhow. So i'm going to give rifing a try and see how well that goes and keep you updated.
Just wanted to let you know there are some lymies who are more neurological in nature and I feel your frustration. Take it easy
Posts: 42 | From Niger | Registered: Oct 2008
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I was infected as a child. Now over 50. Very sick for over 6-7 years ago: brain fog, a lot of pain, poor sleep, note: no joints pain or arthritis. I took abx for over 5 years. In the meantime developed some fatigue as well.
At present: very little problems, kind of weaker but go to fitness club regularly, brainwise feel smart again. Have come back to work full time with little problems. My IQ is probably as good as 20 years ago or better. Memory improves from month to month.
Posts: 8 | From Poland | Registered: Nov 2010
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chiquita incognita
Unregistered
posted
Hi Tri I am not a doctor and can never diagnose, so this is something to check out further with your doctor.
It is probably lyme related and that is where it stops, but if other things end up being involved, then you also want to take care of them, or check into them...
Could there be some kind of auto-immune attack involved here?
FYI in my best understanding lyme itself will cause that.
There are many other things that will cause it:
Food allergies, leaky gut, heavy metals, chemicals (a good water filter is really important. I like the multipure www.multipure.com)
When I attended a lecture/panel of 6 physicians, they spoke of vitamin D as "a firewall" for the immune system. They said it calms the hyperactive immune system while stimulating the tired one.
So it's an immune modulator, according to them.
Buhner says that sarsaparilla also balances the immune system, will calm it if hyperactive and enhance it if tired.
Maybe it's worth trying a food allergy experiment (if they cause leaky gut this *will* lead to neuro issues, you would be very surprised. I have experienced this myself, first-hand and can testify to the utter power of food allergies, in some cases! Even if it's not that way in all of them).
And then also some therapy to balance your immune system, under an ND's guidance www.naturopathic.org if this interests you.
I will wish you the very best with this and hope you are well on your way to recovery! May you turn the corner rapidly toward health and find out just how quickly the light can dawn!
I learned from my own experience with neuro stuff and how scary it was, that just when things seem the most bleak, that help is right around the corner.
Big problems, simple solutions. That is what this illness has taught me.
If your symptoms are strictly lyme related, then maybe the abx have not worked for you and you can talk to your doctor about different ones? Or a new approach of some kind?
I think we need to learn when to stick things out, and when not to give up at all but yes, to try a new way.
Then we find the way that works.
Blessings and my prayers for you. We will all be thinking of you .
posted
Koo, not necessarily breain lesion but maybe due to brain inflammation that pressures the nerves...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I had only neuro symptoms in the beginning. I felt fortunate believe it or not. I was reading about all of the other issues I could have been experiencing. Mine was mostly migraines, vertigo, shocks, and all of the cognitive dysfunction.
Not to discourage you, but the other symptoms came later. Joint pain, major fatigue, muscle pain, and heart and chest issues.
I'm two years into this and shocks are gone, but no great improvement in cognitive function. BTW shocks are also a side effect of magnesium so don't just start popping mag pills. It made mine worse, then I figured it out.
I was on anti seizure meds, first depakote, then topamax. It was helpful in the beginning and did make the shocks subside, but was supposed to help with the headaches, and no luck so we discontinued.
Best of luck, don't give up hope, but also don't wait to learn new ways to live your life, because it could be something that will never go away completely.
BTW that was also a side effect for me when I was on Paxil ten years ago so read your meds info. They may be causing it, especially since you say it's mostly at night.
Posts: 43 | From Upstate NY | Registered: Jul 2009
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posted
Much neuro here from lyme, bartonella and babesia. Among other things I had short/long term memory impaired, word retrieval issues, got very dumb, brain fog, and so on
and as treatment has progressed the brain/mind/emotion impacts have nearly disappeared. I might get even smarter still but it is so much better it feels "normal".
I had to execute a project that is my least favorite type of work
for the organization from which I derive my financial survival although I am competent in that particular arena under prelyme circumstances, it is never my strength.
The survival of my organization depended on it being done well and on time...yikes.
but I got it done ahead and well and so whatever I felt about my recovering smarts...they were proven. (I had prayer backup too)
I did not read all the thread but I agree with whoever said about the amount of treatment so far on babs and bart needing more--and diverse approaches, chaning up combos to come at them.
I use abx, changed and combined, herbals combos, also changed, homeopathics, diet, detox and so forth.
and right now after a second bite last summer and round of infections after undiagnosed
bartonella and possibly babesia (real mind offenders)
that I am better than in 2007 when symptoms first presented..seriously neuro.(agonizing pain and paralysis waistdown, now gone)
LLND is hitting another round on babs/bart, I am experiencing some shocks and babs dieoff but not too intrusive.
so I just want to encourage you that there is more to go with treatment, but lots of hope for better times.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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chiquita incognita
Unregistered
posted
Hi Tri,
I hope you are feeling a bit more hope and encouragement from the messages here. Let us know how we can help.
I wanted to say that I am reading the book Healing Lyme and it is very scientifically researched. I got the book from the library, but am considering buying it as a reference because it seems very well thought out to me.
***There are *numerous* tools mentioned in it for intervening with neurotoxins.****
This could possibly be very helpful for you? If implemented under your physician's guidance.
I am wishing you the best, and sending you light and encouragement!
There will be relief, I think we just have to know when to give up the old route if it isn't working and try a new one. When you find the right route, under the right doctor's care and with the right medications/remedies, you will find relief. Courage, my friend!
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by chiquita incognita:
I wanted to say that I am reading the book Healing Lyme and it is very scientifically researched. I got the book from the library, but am considering buying it as a reference because it seems very well thought out to me.
CI - that's funny! I did the same thing!
I ordered Healing Lyme from the library and liked it so much that I had to buy a copy! I just want to make sure, though... are you talking about the one by Buhner or Wolf Storl... because there are 2 "Healing Lyme" Books
I accidently ordered the wrong one... I read them both, but had to own Buhner's. That's the first book that I could get through the library that I bought anyway!
There is one more I would love to own and that is Pamela Weintraub's "Cure Unknown"
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by triathletelymie: Hey Everyone!
My problems are pretty much all in my brain. Quite frankly, it seems like I have armies of the bugs living there and not even one moving on out! I have gotten no relief AT ALL from these symptoms (brain shocks/zaps when trying to fall asleep, constant drunk/drugged feeling, total loss of executive function, short and long-term memory loss...and the list goes on!)! My entire body feels beyond terrible every single day! This has been going on for over a year now with no change really!
I would just like to know and hear some cases of folks that have had my types of similar symptoms...and for a long time...mostly neuro, with little to no joint pain or fatigue...that have gotten better! I need to have a little hope that it is, in fact, possible and that this won't be permanent and have to live with this for the rest of my life!
Thank you so much! 'Just really struggling lately...
~Tri
Tri - I know what you mean... your symptoms and your frustrations sound just like my son's! He could not read a book for 6-7 months. He still reads slow... but at least he is reading.
I have been searching for an answer for this brain pain because for my son it is the symptom he was most frustrated with.
One day at youtube I put "lyme mind" in the search bar and watched this video with a guy named Thane. It is titled "Lyme Disease Destroys The Mind"
This guy in the video reminded me so much of my son! He's much older... but his symptoms, his frustrations, his confusion... I was crying while watching the video.
So I went to Thane's you tube channel to see if he had any more videos. He had one around the same time as that video and another he had posted about a week before (now this was several months ago - November, I think)
So I watched the recent one and this guy was a different guy! He was alert, able to keep his thoughts together... watch the two videos and you will see!
I asked my son's LLMD what she thought of the surgery this man had...CCSVI. And she says it is a long way before this surgery is approved on a 12 year old child. It is experimental at best... and mostly for MS patients.
Back to researching...
To make a long story short. I found something that lifted the fog... made things better - but not 100%. Plus it's prescription so you have to have a friendly MD who will prescribe you a drug that is approved for alzeimer's patients...
Hydergine stimulates oxygen flow to the brain, relieving symptoms of deteriorating mental capacity. My pharmacy could not find it under the name hydergine... they call it Ergoloid Mesylates.
**If you order from here be sure to find the link for first time orders! You have to MAIL them a completed Terms and Conditions form before they will send you your first order!!
I found out about hydergine though the book "Amalgam Illness" -- he mentions using up to 20mg a day to avoid suffering "brain fog" during the oral mercury chelation protocol.
I belong to an Autism-Mercury support group where parents are chelating their kids with this method and one of the moms in that group uses it successfully with her son.
Relief from symptoms helps life to be more liveable! On the second day of taking 3 hydergine a day my son looked like a different kid! Like someone lifted the fog right off of him.
He started picking up comic books for fun! (He hadn't read ANYTHING for fun in MONTHS!) Now he is reading books!
Before he got sick he could read much faster... but at least he is enjoying books again. Losing this was a big deal because he used to be an avid reader. AND HE WILL BE AGAIN.
Now, if we can make the all-over/bone-crushing pain go away... we'll be golden!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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chiquita incognita
Unregistered
posted
Hi Heather I didn't know about the other two books, I was talking about Buhner. Thanks for letting us all know about this! Best, CI
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posted
Well, I've had my issues since I was 4 years old, so not sure what "normal" functioning is for me. I just know it seems like everyone else (to me) has that luxury of linear thinking and that funny thing called logic.
Truthfully, my neuro problems have gotten better through the years....without treatment. I grew out of *some* like the auto pilot mode, I actually think before doing now. Before, I'd just react to anything and everything, illogically.
Had severe ADHD and tremors as a kid. I grew out of that am just sluggish now. I think all those years of spastic, irratic behavior left my adrenals whipped.
I comprehend and pay attention better now. My short term memory still sucks. Getting worse as I get older or if I'm overloaded with information at once.
I'm slightly more schizoid now. Prefer lots of alone time. Being in social settings for too long (even with one friend) drains me.
I had badly slurred speech. I learned to speak more clearly. That's an effort sometimes. My biggest problem is I speak in generalities and assume others know (or should know) what I'm talking about. So I find myself taking a long time to over-elaborate during conversation. Which irritates some people and makes them feel I may be condescending to them.
I'm also more emotionally sensitive now. I think it's because this disease messed all my hormones up and I'm in a perimenopause state....at 34 years old.
For the most part, I think I'm doing ok...I think....
Posts: 14 | From Illinois | Registered: Feb 2011
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I have mostly neuro issues as well. But I haven't been on tx long enough to give my own experience.
I do have the experience of my MIL though. She is 66 (?) maybe 67 years old. She was bit by a tick in 2000, got the rash and was treated with abx. Her symptoms didn't go away though and when she told her doc, the doc said she had nothing to worry about....she would be fine.
Fast forward to 2007. She now had serious neuro issues....much worse than what I am experiencing. You couldn't even really hold a conversation with her. She was an elementary school teacher and had to take a leave of absence from work b/c she couldn't function well enough to teach the class.
Someone had told her about an LLMD in the area and she decided to see her. She waited several months to get an appointment. She was put on more meds and finally treated for co-infections but progress was very slow....if at all.
This prompted her hubby to do some research and they splurged (I think they spent about $1000) and bought a near infrared sauna and put in the basement. She did this everyday and swears that this was the turning point in her tx.
She actually recommended I buy one too, and I jokingly said...you buying? LOL!
As I said, I'm having neuro issues as well. Brain fog...trouble speaking...(I know what I want to say! Just cannot get the words out!...bolts of what feels like electricity running through my body...involuntary twitches....anxiety....irritable.
But I only just started tx last Thursday so I'll have to wait and see how things go.
Oh...and I meant to add....my MIL symptoms have greatly improved. She says she is almost 100%.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Our LLMD said that Flagyl was good for Lyme in the brain.
I feel like I am getting smarter on it LOL. I've always struggled over our taxes and this year I didn't.
My daughter's tutor says that every week, she is getting more out of her reading. The tutor probably thinks it is her tutoring, but I tend to think it is the Flagyl. My daughter also used to forget what we were talking about and that doesn't happen any more.
Posts: 984 | From US | Registered: Dec 2007
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posted
Mine are in the brain too...just like your original post. While I am hoping for a more formal diagnosis after tues appt with LLMD, I am also looking for hope that once that happens I can regain my executive functioning, personality, and short term memory. It has been over 3 years for me (5 since the bite, but 3 since the symptoms returned following surgery).
I can't work, I cannot formulate written information which is what I am very often hired to do. I look to these posts for hope that my brain will come back. I feel like I have lost all that makes me happy.
So thanks for posting this question and fingers crossed that everyone feels like they are in their "right" minds from here on out.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
I had severe cognitive problems, I couldn't remember how to tie my shoe, as well as being extremely sick. After years of antibiotics, I went on Rifampin and it helped me get back as close to 100% in the brain as I have been, but I had to go off it as I can't afford medicine anymore and my brain is back to like...85%.
I don't know if I have Bartonella, but I think Rifampin helps Lyme too.
I know I'll never be as smart as I once one, and it hurts. I'm still wicked funny though...
Posts: 243 | From chicago | Registered: Dec 2005
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Just a thought..... Three of the most famous LLMD's have lyme Dr B, Dr K, Dr H They have their brains back
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
We've seen great improvement with our daughters neuro functions since going on Tindamax. We just stopped it due to some side effects (specific to her).
Maybe you want to try this and see how it works for you. It did take about 8 - 10 weeks b/4 we started to see improvements. She has been on it for 7 months.
Unfortunately after month 4 when we tried to up the dose she started to experience sever itching. We've been able to counter with Zertec to some extent but unfortunately we stopped this week.
Trying to consult with LLMD to see what we can replace it with.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Do not give up hope, it is possible to get your brain back! My brother is completely symptom free after being sick for over 15 years. Time is on your side, although you have been sick for a long time, other people that have been sick longer than you have still improved. Anything is possible.
I have been sick for 18 years and have every symptom imaginable. After 4 years of treatment the only medication that gave me my brain back was Levaquin. After 1 month of treatment with levaquin my brain was 75 percent better. I also discovered that bartonella was the source of most of my neurological symptoms. everybody is different, you might not have found the right medication yet.
Always remember that there is so much unknown in Lyme treatment. some people may take moron for 2 months and be fine while others need years of treatment. Even though you previously had these symptoms, toxicity or candida from the treatment may also be the source. I swear I had symptoms go away after treatment that had been there for years.
As hard is it may be try to keep a positive outlook. Having Lyme disease take your life is horrible, but I believe giving up hope let's the disease win. If you ever need somebody I'm here for you so feel free to contact me. You'll be in my prayers.
Take care and God bless,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I had severe cognitive symptoms and have gotten my brain back.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi tria, can't read this entire forum, but seeing that you keep bumping this thread i assume you haven't gotten the information you wanted?
It would seem to me tha tyou're just not treating your infections long enough. One month on Rifampin? ARe you kidding me? I didn't even start seeing results until two months. You need to TREAT the coinfections, not just shake some pills at them
little olive
Posts: 512 | From USA | Registered: Sep 2010
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posted
I have my brain back.I was pretty much full on dementia last fall,could not read,organize thoughts,all the usual scary stuff.
Doing quite well now.Currently treating for lyme and left over babs.Using herbs. Life is good!
Posts: 342 | From northern california | Registered: Dec 2010
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posted
Anyone get their brains back after just being on oral ABX?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
For anyone who feels they have treated the bugs effectively (with antibiotics or whatever other methods one might use), but still has neuro symptoms, it could be a great idea to get checked for CCSVI. The remaining neuro symptoms could be from poor oxygen in brain resulting from blockages in veins in neck, trapping low oxygen blood in the brain.
Posts: 1927 | From se usa | Registered: Mar 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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lymeboy
Unregistered
posted
Hate to be a downer, but I have been treating 1.5 years and today might be the absolute worst neuro issues I have ever had. I am completely without hope today..
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
quote:Originally posted by thehause: Anyone get their brains back after just being on oral ABX?
Yes..ME! I'm still treating, but my brain MRI is now normal. I feel FAB most days.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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Give us an update... how are you doing these days? Have you been treating more?
I was really reluctant to treat with ABX for such a long time, but honestly it seems we need them to get better. I was doing herbs and supportive protocols but haven't really gotten better so I'm going back to ABX. It seemes from all the posts here a lot of people got better on it, so we just have to bite the bullet and go for it.
Hope you're doing better.
Posts: 247 | From Ca | Registered: Feb 2007
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Things are the same with me. Thanks for asking! Still struggling. I have been on IV...both rocephin and doxy. I seemed to have had some improvement on oral bactrim/cipro after a few months...I got to probably about 60%, but got tendonitis in both achilles tendons and had to stop the cipro. Now, I have backslid over the last month to about 40%. Not fun. This leads me to believe that bart is more of my problem, which makes sense since I am pretty much all neuro.
How about you? It looks like you have been here a long time......
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Sorry to hear you've slid back. This is so typical of recovery, it seemes it's 2 steps ahead, 1 step back. Hang in there, you're on good stuff, specially the Rocephin. It would make sense that it's Bart, there are herbal stuff for Bart, maybe you can try that.
I'm still here ): My problem was that I had so much neuro stuff, mainly a lot of palpatations that I couldn't do high dose antibiotics. So now finally I'm better with that stuff, although it's still there taht I'm going to ramp up on the abx and see where I get.
I was just reading some stuff about heavy metals and that also could be causing the neuro stuff. Did you ever get a heavy metals test done? I just did one and the results are in so hopefully that will give another clue to what's going on.
Anyways, let me know if I can help in anyway. Good luck and let us know if things get better.
Posts: 247 | From Ca | Registered: Feb 2007
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Tri-
If you had encephalopathy like I did, it can sometimes take months to years to recover from the impact of this....I thought I had coinfections because I would improve and then slide back...What I finally determined is that the abx were impacting my immune system and my body would act differently when I was off of them..
I finally decided to stop all abx as I wasn't geting better treating for any coinfections..
Aside from the Rocephin, modulating my immune system and treating my nerves with supplements has helped more than anything..
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
I am not on rocephin now...I was on it only briefly...six weeks maybe...about 8 months ago. Also was on IV doxy, which made all of my neuro stuff REALLY worse. 'Have been only on orals for about 4 months now. Currently bactrim, doxy and zith. Had to stop cipro because of tendonitis.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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