My short term memory's not been too bad, but in the past few weeks my ability to think logically has gone down the tubes. Does this likely represent a different disease process than that which was causing my brain fog? Is a decrease in fluid intelligence like this irreversible?
[ 04-05-2009, 12:23 AM: Message edited by: adamm ]
Posted by TadichGrill (Member # 19679) on :
Before being diagnosed I had a hard time following conversations for awhile. That symptom went away. I hope you improve and feel better soon.
Posted by groovy2 (Member # 6304) on :
Hi Adamm-
I mind got clearer with treatment-- It did take a long time tho--Jay--
Posted by jt345 (Member # 19638) on :
I have regained some. But now that I am in the middle of a relaps, it is going down hill again. Sorry I didn't have great news for You. But We are all different,what is happing to me might not happen to You .
Never Never give up!!!!!!!!! appleseed
Posted by TadichGrill (Member # 19679) on :
My thinking logically and following conversation symptoms improved before I ever started treatment.
Hang in there. You will get better.
Posted by Geneal (Member # 10375) on :
The good news is that your brain is pretty plastic.
Meaning one area can take over the jobs of another.
It took me almost 2 years into treatment to get this ability back.
Logical thinking that is.
Still occasionally have it, but it is rare.
Hang in there.
Remember, it is kind of the nature of this disease
To forsee only the dooms day outcomes.
Thinking the worst of every symptom.
Hugs,
Geneal
Posted by pamoisondelune (Member # 11846) on :
Adam, there's a web company that specializes in brain supplements:
Ask them what they recommend for your problem. They have a wide variety of brain pills.
If anything can help, they may have some suggestions.
Posted by lpkayak (Member # 5230) on :
adamm-the two supps that help me a lot for cog stuff are on dr b's list
ginko
SAMe and Acetyl-L Carnitine
ginko you can play with the dosage-i take one a day in the morning for sure (i'm mostly up during day) and i take one at night if i plan on doing paperwork or reading non-fiction-or socializing...any thing i find stressfull cognitively
the other combo is one SAMe(400) and 1500mg of the Acetyl-L Carnitine
that combo has to be taken 2 hrs away form food-
i see a big difference with these two things-i esp have problems making decisions and organizing. good luck.
ps check dr b's new guidelines-i don't think he changed the dosage or took them out or anything
ps-i am pretty sure the brain trouble we have is reversible...at least until you get to really end stage...or if you have severe trauma...very often i have really good days and then really bad days-depends on a whole lot of things including the ketes cycle and how well i am taking care of myself---also, look into stuff about cell phones, computer use, microv=wave-i use all these things but find i think clearer when i use them less-even tv
i am considering sort of a diet from all the electrical stuff-i know that might sound crazy to a yound person-my kids would think it was crazy-but the research is accumulating and i see a difference in myself...hmmm, back to nature...no electricity every other day????
Posted by viva (Member # 8183) on :
Adam,
My husband was a professor/researcher before Lyme and co. took over. He lost his job, and was incredibly frustrated by his inability to read even simple things, maintain his focus, juggle simple information in his short-term memory, and maintain any degree of cognitive stamina.
All of those functions are probably back at about 80-90%. For him, it took 3 years of orals, and now 4 months and counting of IV. But it's definitely getting better. He's now enrolled in an intensive job retraining class. He's reading several hours and day and doing assignments, and it's going well. He is 60, and probably had Lyme for 15 years before being diagnosed.
Perhaps most frustrating, one of his areas of study in the "old days" had been brain functioning. This week he said--only half in jest--"I think my frontal lobe is growing back."
So please know that the cognitive issues you describe are treatable and reversible. Be sure to let your LLMD know how distressing the cognitive impact is for you, so that s/he can target it in your treatment.
Take care, Viva
Posted by adamm (Member # 11910) on :
Hey, thanks for the input, all. I'll hopefully be starting babs txment tomorrow, and I'll let you know how that goes...
Btw, lpkayak--The issues I describe actually arrived at their present level of severity after I started several of the supplements Dr. B lists as neuro-protective: Acetyl-L-Carnitine, Green Tea, CoQ10, and Ginko. Perhaps they were contaminated with heavy metals or something...
Posted by pamoisondelune (Member # 11846) on :
Here's an herb recommended by Dr K: QUOTE:
6. Smilax glabra (Sarsaparilla)
Peer review literature/Science:
effective against:
Leptospirosis
Treponema pallidum (syphilis)
liver flukes (clonorchis sinensis)
trypanosome
shigella and salmonella (common in chromnic Lyme)
leprosy and TB
fungal skin infections
Other published results:
Lyme endotoxin binding
Lessens Herxheimer reactions
Improvement in mental and psychological parameters in chronic
syphilis
Modulates immune responses
Arthritis anti-inflammatory
Psoriasis and eczema
Neuroprotective (crosses blood brain barrier)
Reduces skin breakdown
Pain relief
Improves liver function
Lessens fatigue
Increases libido
Asthma, hay fever, rhinitis
Cervical spondylosis (Lyme related disc degeneration and facet
joint arthritis)
Chronic liver disease (dramatic) including Hepatitis C
Reversal of cognitive impairment
Autoimmune dysregulation
Protects from anti-androgenic substances in Lyme (ie gossypol)
Dosage: 425-500 mg caps 1-3 caps 3-4 times/day. Increase slowly to full
dosage, stay on it for 2 months, then slowly reduce to amintainance dose of
1 caps 3 times/day. At least 1 year
Contraindications: Increased digitalis and Bismuth absorbtion (careful with
Am. Biologics Lyme protocol), increased elimination of hypnotic drugs
[ 04-05-2009, 05:27 PM: Message edited by: pamoisondelune ]
Posted by lpkayak (Member # 5230) on :
adamm-yes-it is reall important to get good quality herbs-not walmart shelf...
i am mostly happy with NOW brand and i order from supervits.com he is really quick and cheap-but others on here get from other places. i could not afford the multi dr b reccomends
i get cosamine, mag and sbc somewhere else
btw-my new post about lyme in lungs-at the end where i copied parts of a research article-mentions about lyme stuff neing reversible and also about exercise intolerandce
Posted by pamoisondelune (Member # 11846) on :
Adam-- If you have inflammation in your brain, what are you taking for antiinflammatories and for brain detox?
Are your abx killing bugs in the brain that give you brain symptoms because of die-off, esp. if you aren't doing enough detox?
Are you taking turmeric or curcumin, or lemon juice, or quercetin?
I don't know too much about antiinflammatories; Polygonum cuspidatum (Japanese Knotweed, Buhner herb) is supposed to be good for detox, i think.
If you feel terrible all the time, maybe it's a low-level ongoing continuous herx? I used to feel that way, continuous feeling bad for weeks or a month.
It's really importatnt to get the toxins OUT of your brain. Try Rhodiola.
Did you have an MRI?
Posted by adamm (Member # 11910) on :
I'm taking Welchol for brain inflammation, and will see about picking up some Rhodiola tomorrow. Know which brands are least likely to be contaminated?
As for the herx question--antibiotics know to cross the BBB have so far had basically no effect one way or another, so I don't think die-off is the issue. These are symptoms that have progressed slowly but steadily since about two weeks after I got bitten. I actually did have an MRI done then, BTW, although I probably won't get a brain scan unless it turns out to be necessary for me to get insurance coverage; I just don't know what it would be able to do besides possibly depress me at this point.
Posted by Hoosiers51 (Member # 15759) on :
It has been reversible for me.
The only thing that has helped has been antibiotics.
My recent Bactrim course (at first I was doing it with Zithro and Mino, then I dropped the Zithro but continued the mino) seems to have helped some.
Please don't get too concerned. I have been very ill for 8 years, seropositive for Lyme/Bartonella henselae/babesia, F mystery bug, abnormal SPECT, and I am still having symptoms go away or get better with antibiotics.
You just have to try a lot of different combinations until you notice something worked on a symptom or two.
I just can't seem to shake the fatigue. I think for me that is Lyme or babesia. So obviously I'm still working at this.
Posted by kelmo (Member # 8797) on :
Good news, Adamm. My daughter couldn't remember how to add numbers at 18. She is now doing collee work.
She just got her driver's permit (21 yrs). She attempted at 16, as she was just getting ill. She said she felt out of balance.
She drove for the first time today since that time, and said she felt much better about it.
Drugs that hit the brain helped. Minocycline helped. Rifampin, maybe.
Posted by pamoisondelune (Member # 11846) on :
Hi Adam---
Did you see this quote?(maybe it was in this thread even) QUOTE And, I also started taking Niacinamide, about 150-200 mg every 3-5 hours. This comes from Dr. Williams, the author of the ALTERNATIVES health letter, who says this is a treatment for restoring the cognative degeneration caused by Altzheimers, and can help anyone. UNQUOTE
Two herbs you should probably be taking:
1) TURMERIC or CURCUMIN. They are FAMOUS for combatting brain inflammation. There was a whole article in Scientific American last year praising TURMERIC (or CURCUMIN). Curcumin is the concentrated extract form; it's a bit hard to absorb, i hear. Take it with a meal containing OIL or fat; it's fat-soluble. It's so famous; it's in the media all the time; like, 1% of Indians get Alzheimer's ,compared to 6% of Americans; they think because of the anti-inflammatory properties of turmeric.
2) SArsaparilla (also called SMILAX) is a detox herb in the Buhner protocol. Any protocol for killing lyme also includes detox for removing the dead ones. Are you taking lemon juice?
You don't know how much of your brain misery is from active lyme damage and how much is from dead lyme toxins. If there are toxins, you need to get them out.
You say your abx do get into the brain but they don't kill the lyme bugs. Maybe they do kill some, causing detox problems.
Maybe your abx didn't get into the brain well enough; if so you should try MINOCYCLINE, which is known for brain penetration; it works well for me.
You said you felt worse on ginko, COQ10 etc. I understand that; when i was in the 2nd year of treatment, i took vinpocetine, which is supposed to open up capillaries for better brain circulation --- i only took one pill! It was awful! My brain was too sore or something; it wasn't good. Maybe the pills that promote circulation are contraindicated in certain conditions? i don't know .
Keep trying things! ---from pamois (="pas moi")
Posted by lymeparfait (Member # 14268) on :
Add amno acids in form of a liquid drink...I find this help the neurotransmiters as well as all body functions. I felt immediate improvement with brain fog after takng this. also imediate relief from fibromyalgia muscle pain.
LP
Posted by pamoisondelune (Member # 11846) on :
Adam, Here's a quote from a current thread about serrapeptase, "serrapeptase for inflammation?":
QUOTE
I would go for it on the systemic enzymes--they have helped both myself and my husband.
I took Lumbrokinase for many months at the request of my LLMD, as it specifically helps to clear up stuff in the brain. UNQUOTE
Posted by lymeparfait (Member # 14268) on :
Hoosiers51 your mailbox is full, so here's the product info:
The amino acid product I take:
MY AMINOPLEX by Crayhon Research.
Moss Nutrition 800-851-5444 supplies it
All natural product: contains all essential amino acids in a blend with Magnesium, Alpha Ketogluterate, 5 HTP, Folic Acid, zinc, Vit. B-6 Glutamine, Taruine.
Just add water and mix. sometime I also add other things , like vita-green mixes, fruit and protein to make a lunch type smoothie with more nutrition. But usually take it alone to get it directly into the system first thing in the am.
I got it from my ND...so it may only be able to be purchases at a Dr's office. Not sure.
It was expensive $79.00 But seems to work well for my brain fog and fibro type muscle myalgias.
I do not have severe problems...so I just want to clarify it works on my moderate problems. I have moderate hypoprofusion per spect scan. I can still function ok without it, but I notice when I take it...I feel almost normal!
Posted by Abxnomore (Member # 18936) on :
Adam much of what you are experiencing will improve with good aggressive treatment. As far as supplements go, you should be under the care of a knowledgeable practitioner. Either a alternative LLMD or a an ND or clinical nutritionist who knows what he or she is doing.
One should never just take supplements based on the advice of others. They can be powerful, do different things and work synergisticly with other nutrients and some are specific for lyme.
I don't you are having these problems from contaminated supplements. Everyone in the population is exposed to heavy metals. They are in the air we breath, water we drink, foods we eat and in our mouth if we have mercury amalgams.
You need a integrative holistic approach. I think I have sent you the name of a good alternative LLMD. There are many good nutritional practitioners in the NY area.
Posted by ESG (Member # 4816) on :
Rhodiola is a kind of herbal speed - it kept me wide awake speeding my brains out when I tried it, and I took only 60 mg 12 hours before going to bed.
My cognitive functions decrease when I am sick or under stress - recently I was under a lot of stress and had an alarming reversal of brain function.
ESG
Posted by sutherngrl (Member # 16270) on :
Adam, maybe at least some of what you are experiencing has to do not only with LD, but just the fact that you are dealing with a Chronic Illness.
I mean the just frustrating and anxiety that we have to deal with could also contribute to not being able to think logically.
Either way, I believe that it will all be resolved when the illness is better under control.
Posted by Abxnomore (Member # 18936) on :
Rhodiola is an adaptogen used mostly for adrenal support, whether you have over or under active adrenal function...too much or too litle cortisol production.
Posted by Boomerang (Member # 7979) on :
Adam...hang in there. Sure hope you start clearing that brain fog soon.
Viva, is your hubby still on IV Rocephin? How long do you think he will be on it?