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» LymeNet Flash » Questions and Discussion » Medical Questions » why is there still brainfog after 22 months treatment :(

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Author Topic: why is there still brainfog after 22 months treatment :(
daniel
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hey folks,

im very depressed at the moment.. its about my brainfog which isnt lifting really..


i was 6-9 months sick before i got my diagnose and got my first abx.. since that time im treating constantly 22 months straight now.

sure, my fog is somewhat better.. but its still there.. not as bad on some days.. on others i feel like crap.

im positive for:

borrelia, bartonella and mycoplasma.

here is my complete ABx protocol:

14 weeks mino + plaquenyl
3 weeks mino + plaquenyl + rocephin
4 weeks mino + plaquenyl + azi
6 weeks factive + mino + doxy
7 weeks roxythromycin + plaquenyl + bactrim ds

12 weeks tavanic + bactrim ds + mino
2 weeks metronidazole
8 weeks rifampicin + bactrim ds

4 weeks clinda + quinine
since september 2010:
mepron + biaxin + pulsed metro & artemisin


so .. u see i have done a lot of stuff.. but my fog is still there..

what is my brainfog like.. i try to describe it:

i have headaches forehead and top of head, sometimes they are worse.. sometimes very low.. i have that feeling that im more and more confused, i cant think clearly. my memory is still bad.. i feel "lost"... cant concentrate well.. low appetite.
if im in a place which is loud with many people.. i just want to get out! like a slight panic attack..

im thinking of maybe still having bartonella.. and maybe ehrlichia? (test was neg for ehrlichia)..


which bugs do u know which are causing encephalopathy primaly!?

greetz..

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lymegal23
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Can I ask you why you changed protocols so much. you only spent a few weeks on some of those combos. It seems like you didnt give them enough time. Perhaps thats the problem?
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daniel
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well, my llmd said, if u think that a abx isnt working well, you should change after 8 weeks.

the first part was borrelia treatment mainly,

the second part bartonella and

the third part is babesia..

many ppl here say that if u respond good to meds, you should defenatly feel a difference in 6 weeks.. im really frustrated at the moment..

i always try to take 1-2 abx constantly and add some others pulsing..

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TF
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Well, it may be bartonella. If it is, the best treatment is Levaquin, which it looks like you have never taken. See this quote from Burrascano, page 24:

"Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. ...... Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment.

The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses.

Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay."

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lymegal23
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Were you herxing? Its hard to say that people would feel a differnce in 6 weeks. thats not the same for everyone. Alot of times first 6 weeks are filled with herxing for many

The post above me is VERY informative tho

hopefully others with chime in for you.

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kday
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I see a lot of antibiotics on your list, but I see no anti-coagulants.

There is not a good pharmaceutical anticoagulant. Have you had a hypercoagulation panel? If you're going for power, the most powerful fibronolytic enzyme is Boluoke Lumbrokinase. It is backed backed by Phase I III clinical trials in China, it is used in hospitals in China, and is covered by Chinese health insurance.

Removing the Fibrin can remove the fog but if hypercoagulation is moderate or severe, using it can come with powerful herx reactions. For the common folk, they won't get a herx reaction. It is safe, and there are only a couple reported side effects (very minor).

Also, watch out for fungal infections. That can cause some serious brain fog, and believe it or not, a severe fungal infection can mimic just about every Lyme symptom.

Have you done any rounds of Diflucan?

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triathletelymie
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Daniel - I feel your pain!

I am in the same boat as you...I was diagnosed and began treatment within 6 months of symptoms starting. The brain fog has been here 24/7 for 11 months straight now, with no relief at all! Poor memory, both short and long term, feeling drugged/drunk, brain shocks/zaps when trying to fall alseep at night, inability to multitask/concentrate/organize, etc.

My only thought is possibly IV. A lot of folks on here have commented that, in order to combat brain problems, IV is needed. It looks like you did IV rocephin...but only for 3 weeks? I did it a total of 10 weeks, but not concurrently...it was a few weeks on, a few off...but ten total. I think that I may need to go back on it concurrently and for longer.

Good luck to you! This whole ordeal just sucks...BIG 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

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daniel
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@TF sry, i wrote the german name "tavanic" it is "levaquin"... i took it with tetrazykline type drugs because i knew that burrascano recommentet a non-erythromycine type drug with it.
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lymeinhell
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Ditto on yeast and fungal infections. And detox.

Also, have you addressed Magnesium deficiency? Hyperacussis (sound sensitivity) is a major symptom of it.

Sometimes we all need to remember that every symptom is not lyme.

We may get a constellation of symptoms - some from the borrelia bacteria, and often times many that are attributable to having lyme & cos or the treatments themselves.

I.E. Magnesium deficiency - is caused by Lyme and our bad American diets. It does not go away no matter how many abx we take. It will continue to affect you until you address it. Same goes for fungal infections, heavy metal toxicity and parasites.

Just throwing this out there.

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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Haley
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HI Daniel,

Frustrating I know. I am starting to see who my fellow brain fog sufferers are.

I have been treating since 6/09. If I can get rid of this brain damage (fog is an understatement) I will be well.

Like you, I have also taken several different meds for shorter periods of time but I am trying to stick with my current protocol as long as I can. I am still herxing.

I can tell when a medicine is hitting my brain. I have a herx at the crown of my head, it begins to throb. If a medicine is having that effect I know that I am on the right track.

I currently am on Rifampin (300 working up to 600), Bicillin and Zith. I belive the Rifampin is really hitting something. I have come to the conclusion that Ehrlichia and RMSF are playing a significant role in my brain problems. I also have Bartonella so the Rifampin should hit them all. Have you been tested for Ehrlichia and RMSF?

I am thinking a bit more clearly on this protocol.I also recently went to a place called healing room (sounds crazy, I figured what have I got to lose). I have felt better since going there and am continuing to go. Check out international healing rooms. It's all based on Christian principles. Good luck keep us posted.

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daniel
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hey,

i dont know what RMFS is, but i thought about ehrlichia and read that it can cause some enzephalopathy too.. AND it DONT respond to the meds i took, that could be the clou im searching for, will discuss that option with my llmd. ehrlichia was negative 2 years ago, since that i didnt test it again.

3 weeks ago i took some flucozanol 200mg/day.. but i didnt felt a difference.... im takin probiotics every day in the morning and in the evening.

im thinking about a high dosage doxy (something about 600-800mg)+bactrim ds+ metronidazol, it should aim at borrelia, bartonella, ehrlichia, babesia .. or instead of the doxy high dosage tetrazykline.. maybe they are better because they workin well in acid too

greetz

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nefferdun
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Ehrlichia responds to doxy and rifampin. Rifampin might be a good choice as it will also go after BLO infections.

Brain fog is the only persistent symptoms I have. It never completely clears. Other symptoms come and go but my memory loss and general inability to focus and concentrate is constant.

I started babesia treatment 7 weeks ago and I feel a little better.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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TF
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RMSF is Rocky Mountain Spotted Fever.

Trying to help you here with your original question, you did not give the dosages of meds. Dosage is extremely important. I assume you know how to check your dosages against the dosages Burrascano recommends in his Guidelines.

If the doses are not high enough, treatment failure can result.

Also, I'm not sure about the meds you took along with the Levaquin. Here is a quote from a lyme doctor talking about Levaquin:

"Except for the tetracycline antibiotic group, the fluoroquinolones are not generally used in combination with other antibiotics. Usually the course of treatment for Bartonella/BLO is one to three months, but occasionally it may take much longer."

You took mino and Bactrim DS with your Levaquin. I don't know if that Bactrim was OK to take with the Levaquin. My lyme doc did not have me take Bactrim with Levaquin. Instead, he gave me Bactrim after I finished the Levaquin. The quote above is saying to only take Levaquin with tetracyclines, and Bactrim is not a tetracycline.

Also, you can't take calcium or minerals within 3 hours of the Levaquin. If you do, it renders the Levaquin less effective.

Here is the website that I am referring to:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

Also, it can take more than 3 months to clear bart. So, you may want to retreat with Levaquin again being very careful about the other drugs and supplements you take along with it.

Another approach would be to take Rifampin for the bart and see if you get a herx reaction. The website above recommends Rifampin for the person with mental problems like you are describing. Be sure to take it with other meds as advised and the dosage as advised.

Hope this helps.

Taking Rifampin could be a quick way of finding out if your bartonella is still a problem since this website says you will likely get a herx in about a week on Rifampin.

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kidsgotlyme
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my daughter is on Rifamphin for bart and her LLMD said that she would probably need to be on it for at least 6 months.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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Remember to Smile
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quote:
Originally posted by daniel:
my brainfog which isnt lifting really...

i have headaches forehead and top of head, sometimes they are worse.. sometimes very low..

i have that feeling that im more and more confused, i cant think clearly. my memory is still bad.. i feel "lost"... cant concentrate well..

low appetite.

if im in a place which is loud with many people.. i just want to get out! like a slight panic attack...

Dear Daniel,
Given the meds you've tried and the symptoms remaining, I think you stopped treating babesiosis a bit too soon!

Brain sludge, confusion, getting lost, panic attacks... Those are symptoms of babesiosis.

Babesia could be controlled in 5 months, but may take a couple years for some CLD patients.

I'm not a health care professional, just offering another opinion.
Smile

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daniel
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hey,

big thanks for responses

i didnt write my doses because its not allowed anymore, i have always done high dosages, for example rifampicin 900mg/day.. like that the other meds.. i look regluary on burrascano guidelines.. especially because of the dosage.

im still treating babs, i didnt stopped it [Smile] still on biaxin mepron and pulsed flagyl and arte.

maybe i have to treat bartonella longer?? because i dont have the typical borrelia pain in my joints, my joints are still fine, but my neck is cracking like a crisp roll when i have a bad day :S

[Smile] will adress ehrlichia , bart and borrelia in 2 months with a triple protocol! hope it works

greetz

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daniel
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up...

since 3 days off doxy and tavanic.. and on diflucan since 1 week.. today pale, brainfog.. i hate this disease!!!! so much!!

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daniel
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hey,

yeah i thought about leaky gut because of 2 years of abx.. thats why im always taking some probiotics, everyday.. i want to give it a try without abx.. thats why im actually on flucozanole and nothing else..

since im takin abx.. i try to eat healthy.. for example i dont eat much pizza.. i eat cornflakes.. dark bread.. etc. actually im trying to make a anabolic diet.. that means less sugar, wheat etc. and more whey..

it makes me sick..when i think about the fact.. that im on abx since 2 years constantly and this disease still isnt gone..


especially 1 symptom makes me freak out:

when i close my eyes.. i start dream immediatly.. totally nonsense at all.... but no nightmares.. just vivid dreams.. i have also these "audio hallucinations".. i try to concentrate but have a music song constantly in my head.. playin again and again for 5 hours! and this happens every day.. it sucks because you cant rest and concentrate..

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sixgoofykids
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I read your first post but not the whole thread.

Have you treated for parasites? That's the first time my head cleared.

--------------------
sixgoofykids.blogspot.com

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daniel
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@six can u tell me your parasite treatment?? how long, which meds etc?! i tried parasite treatment 3 weeks ago... but it made me go crazy.. i couldnt sleep, tired, heavy legs, couldnt figure out if it was herx or not.

i took some:
wormwood
clovepowder
black walnut powder

i think its the basic hulda clark treatment.. my llmd told me, that im not lookin good, i have to reach i better state of health and then try a parasite treatment again.

i have high eosinophils since i got sick.. and during the disease.. i've had 3-4 times (in 2 years) some little white worms in my stool..
i have some slight pain under my liver.. i think its from my gut?! .. at the beginning the pain was much worse.. now 2 years after .. it is slight but it is there.. i things its parasite related.

would love to hear about your parasite treatment

greetz

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daniel
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ps: of course i treatet the worms with mebendazole etc. .. but the worst reaction i had, like i said, on some parasite herbs..
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sixgoofykids
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I took Humaworm. Enula in between rounds of Humaworm. I felt horrible on Humaworm, but it was effective. It has basically the same three core ingredients you mention, plus many other herbs.

After many months, I did a Dr. Natura cleanse and four Hulda Clark liver cleanses.

--------------------
sixgoofykids.blogspot.com

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glm1111
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daniel,

I agree with six about parasite tx. The KEY is to not stop the herbs. If the suggested dose is too much for you, you can step into it lightly by opening 1 cap each of the wormwood, balckwalnut hull and cloves and mixing it into some applesauce..

Just take a little at a time to see how you react. Go slow, and drink lots of water with the herbs.

The 3 herbs that you took are the most important to get rid of all three stages of adults, larva and eggs. It's what cleared my head as well.

Coconut oil also helped clear my head.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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jackie51
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Parasites don't like raw pumpkin seeds either. Grab a bag somewhere and use for snacks.

This will at least keep them in line until you can hit them harder.

FYI--every culture has a way of dealing with parasites. japanese---wasabi, italian--garlic, mexican--hot sauce, onion. Try to incorporate the foods that work against parasites, at least for now.

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sixgoofykids
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I ate lots of those foods - onion (whole onion daily), garlic (I even would eat a whole roasted garlic bulb), hot sauce (daily), wasabi. I think those might be good with preventing parasites, but they didn't touch my established ones. [Frown]

Interesting post .... also interesting that all other cultures seem to know they have parasites, yet we are in denial.

--------------------
sixgoofykids.blogspot.com

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jackie51
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American diet? Horrendous and a breeding ground for the buggers
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cleo
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I don't know how true this is but I was told esonophils fight viral and neutrophils fight bacterial.

http://en.wikipedia.org/wiki/Eosinophil_granulocyte#Functions_of_eosinophils

http://en.wikipedia.org/wiki/Neutrophil_granulocyte

You might want to check into viral causes.

Also my head didn't clear until 7 months of mino and pulsed flagyl.

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nefferdun
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My brain fog got better when I treated babesia with Mepron/zithro.
I felt out of it, spacey, confused, unable to focus and depressed with no motivation. I am much better. I was sick for so long I don't know if I am "normal" but it is better.

I tried everything else mentioned on lymenet. I took 30 supplements a day; huge piles of pills. My brain fog did not improve without antibiotics for the right infection. When bartonella was center stage, treating it gave me relief but then the babesia took over.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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nefferdun
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Hey, I just noticed this is an old post coming back up. If you look, I posted back in January and said brain fog was a major problem. Now 4 months later, it is much better.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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map1131
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Daniel, you don't say anything about detox protocols? Detox, detox detox again may help clear out the neuro-toxins still floating around in the head.

All the abx in the world won't clear out dead stuff or other toxins.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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daniel
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hey,

my llmd said, better not to take chlorella because if they are not in good quality, they are carrying toxic substances with them.

so i dont know much about detox, i drink a lot of tea and take some milk thistle every day (2 times).

actually im on diflucan and very weak/fatigued... want to do some candida cleanse for 4-6 weeks with 200mg diflucan daily.. then some parasite treatment.. lookin forward for some brainfog release.. it sucks really.. actually iam having so much to learn again.. mathematics.. mechanics.. lots of integrals and complex lections.

greetz

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daniel
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hey,

ok week 1 is over, no ABx, just 200mg diflucan a day.. to be true.. nothin really happend.. just my headache get worse.. today brainfog is 8/10... [Frown]

Posts: 371 | From velocity of light | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Igor's mom
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My brain fog comes and goes - I actually thin of it as a bran herx some days. But I have started taking acetyl carnitine and carnitine and that seems to help. I am also taking nystatin and taking a five day break before doing my second box of Paragone for parasites. Currently on Mepron for babs but also have c diff so no combination therpay for me right now. You might try the acetyle carnitine and carnitine and see if after a month or so you don't think better.

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Igenenex + IGM 18, 23-25, 31, 41, 66, FL 1953, bart, babs, erlich, c diff. Dox 10/10,11/10-5/11 Mino, Buluoke,plaq (2/10) zith (3/11-5/11), Paragone, Flagyl, Ivermectin, Paromomycin, Ceftin, Nystatin(4/11) mepron (4/11-)BW A-L , A-Bart, A-Bab.

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GiGi
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Shifting toxins - neurtoxins and metals from one body compartment to the next -
causes brain fog, without any doubt.

Most people have developed or have been allergic to these substances and need to correct these dysregulations in the DNA. www.allergie immun.de does that beautifully.

If you live in Germany, I would suggest you call them. They are the best people.

Take care.


P.S. Most people of the many who have and are doing the therapy were allergic to all mucor, fungi, etc., the very thing Diflucan is supposed to address. If allergic to a substance, i.e. the immune system does not recognize the toxic substance, it will not release it. It simply shoves it around and it will remain a stressor to the system that one has to deal with over and over again. AI will eliminate the dysregulations.

Posts: 9834 | From Washington State | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
LSG Scott
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are you on any benzos?

my brain fog and de-realizatoin and vision got a lot better after i found out it was caused by benzo tolerance withdrawal,

if you notice your better days come after upping the benzo a little bit you might want to look into it.

getting off them is really tough and you must go
slow getting off of them as cold turkey withdrawal is very dangerous.

i wish i new a year ago how much the benzos were holding me back and contributing to my symptoms.

i had a big up tick in symptoms when i weaned off them but now they are a lot better, so is my head fog, de-real,vision is sharper than its been in a year, and after 2 months off all the benzos

my blood work got a lot better also, my platelets went from 175 to 225 and my amalase for the first time in over a year came into normal range so my pancreas is very happy too.

and a lot of the other stuff that came on well into my Lyme treatment i now think might have been the benzos.

I am now thinking for me anyway looks like it was the benzos causing my worst symptoms after all.

for more info on Benzo tolerance withdrawal it can be found here.
http://benzowithdrawal.com/forum/

they really seemed to help at first, see here
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/94629?#000000

but it would never last and knowing what i know now i will never take another benzo drug ever.

stopping them was the best thing i have done for my health in a long time.

more info
http://www.youtube.com/watch?v=UsjhqdE7-6A

http://youtu.be/4KsUFIcdrQU

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LSG Scott

Posts: 512 | From Boston, Cape Cod, Mass | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
   

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