I'm at the point of tears, my cognitive problems are still so bad!
I wasn't diagnosed with Lyme until 16 or more yrs after getting Lyme and in that time, I was reinfected.
I was at my worse in 2007 and started Bicillin LA injections through 2010. I improved a lot! I call it "functional". I no longer look ill either (I only did for a yr or 2).
My brain improved too, but seemingly, not very much. I still can't do a LOT of simple math and it was 1 of my favorite subjects. I was a straight A student.
I'm taking traditional cooking courses online and can't do some of the simplest things, because I can't wrap my head around it.
There are so many things that I have to do in a very basic way, because just trying to thinking them out I hit a brick wall SO FAST!
I can learn some things, I've learned so much medical stuff going through all of this. I can read again, but never got back to being an avid reader.
I don't know what to do. I stopped all meds about 10 months ago (maybe longer, I lose track of time). Recently, started back on one.
I'm down to 2 specialists and my LLMD. I'm so desperate, I was just thinking of going back to my neurologist. Then, I thought, "what can she do?" (I wonder if I should get another MRI.)
I just finished a "brain and neuro detox" - burbur & pinella. No improvement whatsoever!
Does anybody have any suggestions?
Posted by foxy loxy (Member # 47053) on :
I find l-theanine plus taurine helps me focus better. I am not a big supplements person, but these really do DO something!!
I am struggling with a lot of the same things!! Posted by Robin123 (Member # 9197) on :
What if you start from what you can do? I figured this out awhile ago when I was upset about what I couldn't do, and just asked myself, well, what CAN I do? And I started there.
It means to do things the way I need to do them, like if I'm going shopping, to make a list in advance so I don't forget, then put it in a place where I know where it is, etc.
It helped me to start from where I'm at rather than where I'm not. And it's like we find our way. I figure out how to manage along the way.
Like if you are trying to do something, it sounds like it must be at YOUR pace, not theirs. So that means you would be working with material that you can control the pace, etc.
It's baby steps, but hey, little by little, I have figured out what I need to function.
Then if anything changes in my situation for the better, that opens up more options.
I am more cognitively functional than you are, it sounds like, so just be good to yourself as you look for more medical help -
Posted by me (Member # 45475) on :
I'm very sorry to hear you are having such a tough time. How confident are you in your LLMD? Is he or she very competent, or could it benefit you to try a new LLMD?
Posted by tulips (Member # 44773) on :
I'm sorry to hear of your problems. I've also had very bad cognitive problems. Your LLMD should be able to help you. Years ago, my cognitive problems were
cleared by antibiotics. Several times, I have been able to clear my own cognitive problems with Stephen Buhner's protocols in his books, "Healing Lyme."
I hope that you find a solution soon.
Posted by Brussels (Member # 13480) on :
I had taken my PhD in two languages that were not mine. A year later, I developed lyme.
In a few months, I couldn't make ANY math anymore. Not even know how much change I should have gotten...
All my languages, except 2, were gone. Decades of learning, gone...
Even in my own mother-tongue, I sometimes forgot many words and couldn't express myself normally...
I kept trying to read articles in the newspaper: I understood all words, but could not grab the sense.
I kept re-reading the same article, on and on, but again, I couldn't get the sense, the meaning.
It was SO frustrating.
Then I started forgetting the MOST basic things, like the way back home, what I was doing when I went out (for which purpose I went out)...
It was then that I started laughing of my own stories...
Either I cried, or laughed, and most of the times, my brain was so consumed that I started laughing, and taking things easier.
All my brain abilities came back to me.
The languages, the understanding, reading, learning ability, interests, feelings, empathy, even the feeling for music that I had lost too (without noticing)...
They came back when lyme was no longer there.
I today know that the MOST basic things in life need ENERGY and some health to exist.
Appreciating beauty, enjoying the moment, relaxing in a profound way, understanding what people say or feel, thinking, pondering, imagining, the feeling of real pleasure, all that need ENERGY and some health.
Even feeling taste and smell needs some health to happen! I felt half of the pleasure in eating during lyme. Even taste had partially gone.
Without energy and with neuro diseases, it is impossible to feel all that again (full taste, full appreciation, brain abilities, etc).
It's like trying to walk without legs.
Keep treating, things will improve, and I assure you: your abilities will come back, as well as your faculty to enjoy life again.
there is clean Omega 3, good magnesium, gingko tea, and chlorella (my favorite binder). I felt less foggy when I was on tons of chlorella.
Both daughter and I suffered from several years lyme, neuro lyme, brain infections. All is past today.
I swear, everything came back to me, except one thing: the memory of some years during neurolyme. I have almost zero memory of at least, 2 years of my life.
When my brain was not working (like you said, not able to compute anything), I didn't keep any memory (people I met, places I visited, just nothing was imprinted!). That is blank.
but memories and abilities I had previous to lyme, and after lyme, they are like always.
Don't try the impossible today. Just keep treating! You'll improve, if you keep treating, listening to your body!
Posted by tulips (Member # 44773) on :
I think having the cognitive problems associated with Lyme is a lot like wading through soup. I really think what brought back the clearness of my thoughts was Cat's Claw. It is very gentle to take and seems not to be doing anything, but after a couple of weeks, you just notice that you
are clear headed again. That's because Cat's Claw passes through the BBB (blood brain barrier). It travels into your brain and kills the spirochettes that are causing the brain fog. Also being a cat person, I love the name of it.
Posted by j_liz (Member # 20496) on :
Thank you, all.
I think my LLMD is a good one. She got well, I believe all her family did, except her LLMD husband (he died).
I have been on Cat's Claw during the whole 9 yrs. and my LLMD just increased it.
I do things as if I am doing simple math, you know, the long/easy way. I can't do it any other way. Even thinking the most basic things I hit a wall and have to tell myself to forget it, let it go.
I have long term and short term memory problems. Family will say, remember this , remember that. No, I don't. Then I think of Alan McDonald's Alzheimer research. Am I going to get Alzheimer's? At 40 something, teaching, I felt like I was getting early onset.
I have been ill since my mid 30's and thought I would be well by mid 50's (if I did the math right there, I don't know). I'll be 60 in about 6 weeks.
I have a vision of the woman I want to be, but ...
I still sit around 98% of the time. I had exercised for 1.5 yrs., but then hurt my back (not related) and haven't been able to get the strong desire/motivation back. I don't know how long it's been, months? Even after exercising, I sit all day.
I call a day productive if I do 2-3 chores. I don't think I actually lack so much energy. If I can mentally push myself, I can get things done. (Sure, if I overdo it I'll pay the price.)
Oh, and I had really nice energy about a month or so ago. It was great! Then something happened, I don't know what.
Why do I have to mentally exert myself to do things? My LLMD doesn't think it's depression, because of the things that I do, like take those cooking lessons.
I probably shouldn't complain, because I can do things that were impossible 8 yrs. ago. I know some are not so fortunate. I'm just so frustrated!
I'm sorry this is so long. I should just keep a diary. LOL I have tried that, I'm not good at keeping up with it.
Posted by lookup (Member # 44574) on :
There is a cell salt called Kali phos 6x for brain fatigue. It acts like a tonic for the brain.
For: "Great despondency about business and pecuniary affairs. Indisposition to mix with people. Disinclined to converse. Brain fog from overwork. Depressed spirits, general irritability, or great
impatience. Loss of memory, omits letters or words in writing, uses wrong words, confusion of ideas. Dread of and oversensitiveness to noise. Dullness, want of energy, the slightest labor seems a heavy task.... "
If you are already on Cat's Claw and it's not helping your fatigue or brain fog and short term memory deficit, then it must not be Borrelia. It might be Bartonella and Babesia. Both are notoriously hard to test positive for.
In Dr. S's book of symptoms, "Checklists for Bartonella, Babesia and Lyme Disease" which used to be free to read on-line by googling the title of the book (and probably still is available) - under the symptom list for Bart
on p.3 it lists Brain Fog and Short Term Memory Deficits and Babesia lists on p. 70, Fatigue. So you might want to print off a copy and show it to your LLMD in case she hasn't seen his book. Just a thought.
Posted by j_liz (Member # 20496) on :
tulips,
Oh, they're both hard to test for? What should I do?
My LLMD did muscle test me with Byron White's formulas for both and I tested pos. that way.
BTW, I have to mention that I hadn't been going to my LLMD for quite awhile until recently. I went back 3 months ago, because of the cognitive issues (I think).
I do remember getting a Lyme book at the very beginning of my journey and I had a lot of the symptoms of both, but so many overlapped!
I will mention to my LLMD about those two co-infections.
I do have mycoplasma, but she wanted to treat me with the Byron White things and I didn't want to do that. I didn't know if they were truly effective.
I do take lots of supplements suggested by my LLMD. As you know, all of this costs a fortune!
Posted by j_liz (Member # 20496) on :
Omgoodness! I think I just discovered why I have been feeling so horrible!!! Pregnenolone!
From WebMD : There isn't enough information to know if pregnenolone is safe when taken by mouth. It might cause some steroid-like side effects including overstimulation , insomnia, irritability , anger , anxiety , acne, headache, negative mood changes , facial hair growth, hair loss, and irregular heart rhythm.
Posted by Keebler (Member # 12673) on :
- Editing in after the links all posted: Your LLMD is the first person to discuss this with if you have questions or hesitations or reactions.
And check your dose, too, be sure of what was suggested and what's the dose on the capsules in the bottle you got. Your LLMD should know all about pregnenolone.
If you have started just one thing, or doing one thing differently and then you have some unwanted symptoms, by all means, back off and see if that helps.
The LOWEST dose should be started with pregnenolone and gradually work up to what your naturopathic doctor might suggest (or MD if they know about this area).
Still, I would not worry about that caution from WebMD, they caution for light, air, water, broccoli, too.
Do read fuller articles for how it works, the benefits and the cautions. Main caution is with dose.
You might check your dose, and the source, though and be sure it's authentic (not counterfeit).
In the right dose, pregnenolone can be just fine. I took it for years and it was very nice for me. It is best if you have a naturopathic doctor guide you on the right dose / brand for your body at this time - & to determine if it's right for you.
For supplements, some of the more accurate detail comes from authors who really know about those and the mainstream medical sites don't.
They just say "not enough information" but they don't even know where to look (and don't invite those who are expert in the field of nutritional medicine to come into their world). And they are really very much against people taking any supplements.
There are some really good information articles on it out there. Best to get information from naturopathic doctors who have four + years of post graduate medical education in this field. -
[ 09-28-2016, 04:00 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
. . . It is important to note that we are speaking of natural progesterone and not the synthetic tablet-form progestins typically prescribed by a doctor. Synthetic progestins can have many side effects and should be avoided. . . .
Q: . . . does pregnenolone act similarly to cortisone or prednisone? That is, does it have an immune-response suppressant action? Could you describe a bit more how this substance works in the body? . . . .
Stephen’s response:
No, pregnenolone is not like cortisone or prednisone in its actions, nor its molecular structure. Pregnenolone is the first metabolite of cholesterol, that is the first hormone that cholesterol is made into in the body.
Eventually, through a long chain of processes cholesterol is made into the sexual hormones testosterone and estradiol. Pregnenolone is considered to be the mother hormone for all these many subsequent hormones.
It is a steroid hormone but NOT a steroid. It is a natural substance produced by the body daily. It does not have an immune suppresant action that I am aware of and I have read the literature extensively.
Pregnenolone is a long story but it is intimately connected to the formation of collagen and connective tissues through a number of mechanisms. -
Posted by Keebler (Member # 12673) on :
From the Townsend Letter - May 2013 - an overview by Michael Gerber, MD, HMD
3/4 of the way down, excerpt:
[section heading] Pregnenolone
Pregnenolone, the mother hormone for the adrenal gland, keeps brain functioning at peak capacity. It has its highest levels in the brain and enhances mental function, repairs brain and nerve tissue, protects cerebral function, and guards against neuronal injury.
Pregnenolone exerts effects through different hormones such as DHEA, progesterone, estrogens, testosterone, cortisol, and aldosterone.
Optimum levels of pregnenolone occur around age 35 and by the age of 75, 65% of pregnenolone is lost.41 Pregnenolone is neuroprotective.42,43 It improves memory and learning and is a new biomarker of cognitive aging.44,45
Supplementation improves memory and cognition and increases mental performance under stressful conditions.46
Pregnenolone improves release of acetylcholine (Ach) and modulation of Ach neurotransmission and may alleviate AD.47,48
Mechanisms of pregnenolone include stimulation of layout of new brain connections, improved neurogenesis or neuroplasticity, excitatory effect due to affinity for two types of receptors by activation of NMDA receptors, and occupying GABA receptor sites.49 . . . ---------
Last sentence: "Mechanisms of pregnenolone include . . . excitatory effect due to affinity for two types of receptors by activation of NMDA receptors . . . ."
So, while it's also a foundation for all adrenal / stress hormone so a person might be in better balance,
if your experience with a TINY dose, is too excitatory, it could be that the NMDA excitatory receptors for you are just too stimulated whether by this or a combination of other factors.
The toxicity of lyme, some food additives, artificial sweeteners, MSG can all zoom the NMDA receptors to the moon. Just to keep in mind.
Going back to the website and Adrenal Book from James L. Wilson is the best place for more detail. -
Posted by Keebler (Member # 12673) on :
- Always check for counterfeit products, though. For everything, Rx, OTC, supplements. Each bottle. Every time.
After reading some of the articles and referring to Wilson's book, it's good to keep in mind that each person can have a unique response to anything, even some foods.
Melatonin "reads" absolutely excellent yet my body just does not tolerate it.
If Pregnenolone is too stimulating for you, then it's likely either the wrong dose, not in the right balance or just not right for your body at this time. You may not need it.
Or, whether due to brand, additives (what else is it it?) or the substance itself, what you took just might not be right for your body.
Put some tape on the bottle with a note and take a break. -
Posted by j_liz (Member # 20496) on :
Thanks for all the info, right now I cannot read it.
My LLMD did a blood test. Let's say the lab's ref. was 16-150 (it was something like that). I was 2 above the bottom, say 18.
She felt I needed more and started me on Pure Encapsulations at 10 mg once a day. Initially, I felt like a light was turned on. Eventually, that wore off. (Am I repeating myself? Sorry, if I am.)
Then she told me to take 2 doses, divided. That may have been when the problems started.
I did start a few other things about the same time, or a month apart. I started Calm CP, frankincense essential oil and she switched me from pot/mag to mag. malate. All 3 of those , I started at the same time.
I stopped the Calm CP and frankincense after realizing something was wrong and it more than likely was something I was taking.
Posted by Keebler (Member # 12673) on :
- Pure Encapsulations at 10 mg once a day.
Excellent Brand, very reasonable dose start. The increase, too, sounds good advice. Still, you might want to back off and try another time.
I don't know about Calm CP, I'll look that up.
Magn. malate should be helpful for tissue pain yet it could cause some stomach upset. It is an acid, after all, malic acid.
As you started 3 other things at same time as pregn. dose increase, that can be confusing.
Any essential oil can really topple me. Not sure if you are doing it as aroma therapy (best way) and Frankincense can be rather strong. I really like the smell, yet, it makes me rather nauseated. I had to get it out of my apt.
If you have any degree of MCS (multiple chemical sensitivity), just about any essential oil can kind of boomerang, even as aroma therapy. Sure does for me.
The only scents I do okay with are citrus: lemon; grapefruit; bergamot (so, so very nice). I've heard similar from others with MCS, citrus -- or mint but nothing too flowery (though Frankincense is not a flower, it sort of has a deep flower hit to it). -
Posted by Keebler (Member # 12673) on :
- I've taken all the ingredients in this in one formula or another over time and all did fine for me. Nothing rings a bell but maybe others will have some comments. Excellent brand.
. . . banaba leaf and blood sugar control . . . The leaves also contain the minerals manganese and zinc. . . Extracts from the seeds have been found to have powerful antioxidant properties . . . . -
Posted by Keebler (Member # 12673) on :
- As for thinking and able to do it for some things but not others. Why do you think I post so many links or answer only certain questions (usually about herbs)?
It is the only thing I can do. Seriously. I can't think my way out of a paper bag for nearly any other function. But I remember everything I ever took, or read, about just about any herb.
But I could not read a novel to save my life. And I used to teach journalism. I can't read a book other than about herbs - or biographies where some of the local are places I've actually been to for a memory / visual reference.
I cannot figure out how to do easy mending with a sewing machine two years old - after a life long one quite. the sewing machine might as well be a jet airplane I'm trying to fly.
As for cooking: figure out ingredients and approximate amounts for spices. Forget measuring anything. Add spices / herbs a little bit at a time and then test.
SAUTE onions, garlic . . . ginger . . . mushrooms and cool in fridge and then FREEZE. You can pull that out and just add to any recipe.
As it freezes, in smaller glass jars, every now and then stir it so it freezes in manageable clumps to just extract enough for a meal.
Cooking far easier than baking, too.
Other than noise / fridge / neighbors . . .
TURNING AROUND IN THE KITCHEN is the number one obstacle to thinking in the kitchen if you have any kind of inner ear issues / balance.
More later if you want some hints on how to help maintain focal point and turn head & body for cooking. It's tricky. And very exhausting.
If not gluten-free, that should help brain a lot.
Remember INFLAMMATION is a big matter with brain function. And when infections are better addressed, that should subside.
Be patient. Now, I'm barely getting any actual treatment so don't let me dampen your hopes. I still try to do what I can to function in some way and hope, maybe, to share good stuff.
I have seen that others who get more comprehensive treatment (various ways) DO get their brain function back.
If you have an inner ear issues - or are at all sound sensitive - that can also really cause brain drain. Even my fridge makes it impossible to think when it's one, it's so vibrational.
Consider those things, too. Just be sure you are on track for direct treatment of infections and be sure your LLMD is able to do that and not just support methods.
You might also consider a rife machine, if at all possible.
And, along the way, appreciate yourself, appreciate beauty & the arts & nature & the best kinds of spirit in humankind. That's life, too, even just noticing & appreciating.
Watch TED Talks when you can. -
Posted by Keebler (Member # 12673) on :
- You say "I have been on Cat's Claw during the whole 9 yrs. and my LLMD just increased it."
Is this the only thing you are taking to address lyme / TBD? [you say you took abx many years ago, though]
IMO, that is not nearly enough.
Is it the real Cat's Claw or TOA-free Samento?
Either way, nothing stands alone or for that long. -
Posted by Keebler (Member # 12673) on :
- Are you getting enough clean meat / eggs / salmon now and then?
When I tried to be vegetarian, my brain was just mush. I started to do better when I started eating meat again, but not from industrial animal factories. Vegetable protein is essential as well but not enough for many who are ill.
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .
Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.
Excerpt:
" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."
- 20 pages - Full article at link (or web search the title if it does not go through). -
Posted by j_liz (Member # 20496) on :
I was only on abx for 3 yrs. and yes, I am only on Cat's Claw (Allergy Research product, TOA free).
All the other supplements are to take care of symptoms.
Um, I don't know how to put it, but... Neat to hear that you (and maybe others) can excel in one thing and not many others (like me).
I do have an EMEM, 2 tubes, analog, by Dave(or was he the guy that told me how I might fix it?), a guy that passed away quite some time ago. I haven't used it in a very long time, probably since 2007.
One tube shoots what looks like flames. Somebody that knows about Rife machines sent me directions to try and fix it, but I need hubby to look at it. I was just thinking about selling it.
I wish I could absorb all you are telling me and remember it, too. Maybe I'll feel better in a couple of days, since I stopped the pregnenolone.
I appreciate all the responses and for you, Keebler, keeping up with my posts and responding. <3
Posted by bluelyme (Member # 47170) on :
Iv phosphytadlycholine helped a bit ..also bee venom clears fog for the day
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever - not if there is inflammation in the spine with active infection. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books.
You cannot see in the video that it does pulse slightly between the two round discs on either side inside the bulb. With different frequencies, it both pulses with varying intensity / speed and also varied brightness
I would not recommend the aluminum foil behind the bulb, though, I've never see that and it's not needed and also can cause the motor to overheat - the backing should be a mesh so air can circulate. The foil may have been used solely so it would show better on camera(?).
The bulb does not get hot at all. The motor, though, can overheat.
Such a unit should not run longer than for 20-25 minutes, then cool down for 30 minutes before using again -- according to DT, the man who made my EMEM5a many years ago. I just looked at the instruction page sent with mine to be certain of that time instruction.
But this shows a basic bulb.
I don't know what you mean by "flames" with your unit but "flames" sounds like a very serious risk and absolutely are not supposed to happen.
If there is a communication / definition matter here, though, the point is that all activity should be similar to what you see here INSIDE the bulb, as a light bulb that just works differently than what we have in our house lamps.
It's not the light that does the work, though, it's the radio frequency. The light inside the bulb just shows the connection, so to speak (my forte is certainly not with words so do see the links set). -
[ 09-29-2016, 02:36 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Dr Nicola McFadzean: Treatment for Chronic Lyme and Co Infections
24-minute Video . . . Jun 1, 2013 -
[ 09-29-2016, 02:06 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I don't know how to say this. My biggest concern is that TOA-free cat's claw is not doing you adequate service, nor your current ND to not be more assertive in direct approach options or regarding assessment / re-assessment of other tick-borne or chronic stealth infections.
There may be a few very lucky folks for whom TOA-free cat's claw worked (and good for them) - but many more for whom it did not. Still, increasing the dose can still bring on a clobber and yet not really do the job.
IMO, it's time for a different coach and different dance partners.
See the Taylor article for more detail. Buhner also has the viewpoint of Taylor and will use only the real cat's claw - but never as a solo agent, it's more for support.
Cat's Claw - and the very different TOA-free processed tincture
See full "Cat's Claw" chapter in Buhner's Lyme book "Healing Lyme" (and his other writings on this)
This author raises the vital point that since Cat's Claw is really a support herb, not a direct anti-infection agent . . . and its use is not good for the environment, why not use plants that are equal in benefit and their use does not destroy the environment?
Of course, there are some herbal groups that are growing this with ecological health in mind so if one does still use it, be sure it's from a eco-reputable source. And that other agents that are direct treatment also be on board.
The best place to start learning more about this herb and its properties is:
Lyme disease: a hard road to diagnosis and recovery
By Conan Milner - Epoch Times - September 23, 2016:
. . . Lyme disease is not the infection of just one organism. . . .
. . . You need to be treated until you have no more symptoms. Period. . . . -
[ 10-02-2016, 02:06 PM: Message edited by: Keebler ]
Posted by lightfoot (Member # 2536) on :
Great thread! Thanks, Keebler and everyone else!! I just ordered the Lyme Brain book, pricey but it sounds worth it.
I agree, the cognitive symptoms are at the top of my list to move out of. I did very well on rocephin 8 years ago....I am slipping back now.
I also agree, we have to start with what we can do and appreciate that.
Posted by TF (Member # 14183) on :
j_liz. your lyme doc is just considered fair--not poor, not good, and definitely not excellent.
I don't recommend the doc in Pa. either. She has a 1 year wait, is very expensive, and many people don't like her manner and won't go back to her after one visit.
If you want a very good doctor, I can give you a name. He is right outside of Washington, D.C. You could take the train if you don't want to drive. Then, the subway to within about 2 miles of his office.
He is cheaper than the Pa. doc, that's for sure. He gives high-dose combos of antibiotics as in the Burrascano protocol.
Let me know if you want the name. No wait to see him, and you only have to come in person once every 3 months.
He is helping many get well.
Posted by ktkdommer (Member # 29020) on :
My son's last MRI with contrast showed a Chiari 1 Malformation. We are digging into whether or not this is the cause of his cognitive issues.
He did an all day neuropsych evaluation which put into numbers the areas he struggled in and how far off the norm he was. He even had adderall that day.
If you have good insurance I would do MRI with contrast and get an evaluation. Then you will know what you are dealing with and could rule out anything wrong with the brain.
I wish my stubborn son would do IV abx again and hit bartonella. New ILADS has a different agressive rotation of IV meds that he didn't have 6 years ago.
It took me 5 years with good doctors to get well. It is weird when you can think again. Now I notice everytime I can't and worry. I'm 50.
My on though at 21 is like an Alzheimer's patient and can't live on his own. He can't cook without someone in the kitchen with him. He went from gifted in 3rd grade to an IEP in HS.
Hope you get better!
Posted by j_liz (Member # 20496) on :
I'm excited to tell you all, that I stopped the pregnenolone after Wed's a.m. dose and by Thur. I thought I was getting better. By Fri. I definitely was better!
I got my energy back, I cleaned and decorated. Mind you, it's not the energy of a healthy person, but it's very nice. PTL! I'm not terribly irritable and all those other horrid feelings I had. I'm not as overwhelmed cognitively. Yes, it's still bad, but it's at my baseline.
TF, did I say who my LLMD was? If you really do know, is he/she really just fair?
I got so much better with Bicillin LA by '10, that I stopped it. I was on it 3 yrs. Foolish? Maybe, but I thought the Lord was leading me to, to prevent abx damage. I don't think I mentioned I had stopped seeing him/her for awhile, except here and there. (I can't really remember. *sigh* )
I can't travel far, because I'm too insecure, I have been all my life. However, there is another LLMD also, within 15 mins. of me. Is he/she good? Last I knew, he/she did not take my ins., but that was yrs. ago.
Kt, I am so very sorry to hear about your son. Chiari is low lying tonsils (brain)? I have low lying tonsils. I saw it on my report yrs. ago, but it was an "incidental" finding. Nobody ever called it Chiari and my non-medical opinion LOL, is I don't need to bother with it. I don't want to, either. I surely hope your son can be helped.
Did I mention I wanted to get another MRI? I want to see if the few lesions I had are gone or if I have more, or if my brain has any changes I need to be concerned with.
Posted by TF (Member # 14183) on :
You said this about your doc: " She got well, I believe all her family did, except her LLMD husband (he died)." And, you are in NJ, so that is how I know who your doc is.
Yes, she is really considered just fair by the long-timers here on LymeNet. So, it is not just my opinion.
I have over 6,000 emails from lyme patients spanning a number of years. They write to me when they are looking for a better doctor. So, that is how I have amassed so much info on the lyme docs on the east coast.
I have many reports on the various lyme doctors in New Jersey. Based on these, there is NOBODY in NJ that I recommend. It has been that way for years. If you want a GOOD doctor, you have to leave NJ.
And, there is nobody good in New York City either.
Posted by j_liz (Member # 20496) on :
That's a bummer that my LLMD is considered or is only fair, TF.
Should I delete my post? I didn't mean to give away a LLMD.
TF, can you tell me here or in a pm why people don't think my LLMD is only fair?
I thought my LLMD was good, because he/she uses so many natural products. Plus, I improved so much and I take the blame for quitting the treatment early. He/She goes to the conference every year and to one that is on herbs and such.
(Omgoodness, hrs. later, I find I never hit "add reply"!)
Posted by TF (Member # 14183) on :
Once you have seen a top notch doctor, you will then be able to see why your doctor is considered only fair.
Years ago I wrote a post about "what makes a doctor top notch." It is here:
Lymenet keeps it at the top of the Medical Questions section under Important Info about Lyme and Cos. Perhaps if you read it, you will understand what you are missing.
Basically, a top notch doctor has much more success than a fair doctor. For example, I had undiagnosed lyme and coinfections for at least 10 years before a doctor tested me for lyme and I was positive.
Then, I went to 2 fair or lousy doctors who treated lyme. I wasted 2 years with them, taking their antibiotics. Then, I switched to a doctor who followed the Burrascano protocol (meaning high-dose combinations of antibiotics--being on at least 2 lyme antibiotics at once).
In 8 months, I was symptom free and in 13 months I was finished with treatment. That was over 11 years ago and I have never relapsed.
Within the first month, my horrible lyme insomnia was GONE. GONE!
I got my normal brain back quickly under his care. I am normal in every way and don't do anything to keep lyme away.
This doctor told me at my first visit how I must eat so as not to get systemic yeast. I did it and it worked. He also told me that I must do the Burrascano exercise requirement (one continuous hour of weight lifting every OTHER day--a full body workout each time) or I would NEVER get well. This type of exercise restores your compromised immune system. Read it in Burrascano, page 31.
I did it and it worked! It did as much as the antibiotics to bring me back to wellness.
At the first appointment, he tested me for many coinfections through Igenex. The previous 2 doctors had never done that. If you don't treat every disease the patient has, the patient will inevitably relapse.
When I reported a symptom to him, he had me take a supplement or herb that immediately took care of the problem. He knew how to treat 2 diseases at once and did that for me.
If treatment is failing, the excellent doc figures out right away what is amiss and changes the treatment so that it is again working.
So, maybe your definition of good is using many natural products, but the lyme community's definition is getting folks to wellness quickly.
I know your doc is known for trying her best to help folks. And, she doesn't cost as much as many. But, that has nothing to do with the definition of good or excellent or top notch.
Are you willing to treat the Burrascano way? If you STUDY the Burrascano Guidelines, you may see many things that your doctor does not/did not do for you. That may give you some clues as to why she is rated as fair.
And, since 2008, there have been many good additions to lyme treatment. So, for example, there is glutathione to help the patient that has difficulty detoxifying. Dr. H. gives this in an IV to all his patients at the first appointment while they are in the office.
I know how scary it can be to change doctors. I did it twice. Still, it was the best decision I ever made for my health.
You have to become educated about this disease. I studied (nearly memorized) the Burrascano Guidelines and I went to hear Burrascano speak, even though it was out of state.
Everything became clear at his speech. I could see why my doc was inferior. I even got to submit a question about my case and Burrascano answered it from the podium.
I said "What do you do with a patient who is on antibiotic therapy and develops a new symptom--trigeminal neuralgia?"
His reply was, "If the therapy is inadequate, the disease will continue to progress."
So, that is how I was told that my doctor's treatment of me was inadequate. It certainly did NOT line up with the Burrascano Guidelines.
It was so very obvious to me that Burascano knew so much more than my doctor. So, I knew then that I needed to find a doctor who followed the Guidelines in every way. That made the difference.
Many lyme docs don't have the courage to follow the Guidelines in every way. Many don't do all the things Burrascano says to do. And, many don't advise their patients to do all the things Burrascano says they must do.
You could go through the Guidelines and write "yes" or "no" next to each thing he says that the doctor must do or the patient must do. Perhaps then you would have an idea of where your treatment is lacking.
For example, many lyme doctor refuse to treat their patients with cyst busters. That is a guaranteed failure per Burrascano. And, you always have to be treated with at least 2 lyme antibiotics at a time (see "Combination Therapy") because lyme is capable of evading any one antibiotic (like bicillin alone). And, you must be treated at the high doses Burrascano requires.
He gives the required dosages for each med and tells the doc to test for the peak and trough levels of many of them. See page 18 at the top.
Hopefully, this explanation will give you some clues.
Posted by me (Member # 45475) on :
I would be a lot less ill if I had the knowledge I have now and knew/ had access to seek a qualified LLMD earlier on. You will spend more money in the long run on lousy or mediocre docs.
TF recommended a good LLMD to me. I've been with him for about a year and have made nice progress. I still have a ways to go, but he has helped me a great deal. TF or I can send you his info and more details if you want them.
Btw, TF, great link to your earlier post about what makes a good LLMD.
Posted by j_liz (Member # 20496) on :
Thanks, TF.
I just thought that since my LLMD was integrative, it was a plus.
I will look into all you shared and talk to my current LLMD about Burrascano's method. If she doesn't want to do it, then I will ask hubby about going to DC.
Another problem is, I may not be able to afford it. I probably spent over $70,000.00 on medical bills, much of it before getting diagnosed with Lyme. I only was able to go back 3 yrs. before my diagnosis and it was $30,000.00, and the previous 3 yrs. I had more drs., tests, etc. (I started dr'g in '98.)
I would've never been able to afford that, but I HAD an inheritance. Goodbye inheritance.
Dr. Burrascano did say Bicillin LA injections were equal to IV's.
Also, I have never tested pos. for Lyme disease and I tested 4 times. It was the 1st thing my drs. suspected (but nobody asked me about a rash, until I went to the LLMD). I tested with IGeneX back in 2006 for Lyme and all the known infections in NJ at the time.
I was negative for all, including Lyme,in spite of having had the Bull's Eye and 30 some symptoms. I did have a couple pos. bands and IND bands, but negative.
My LLMD tested me a month ago, again I was neg. for Lyme.
Posted by j_liz (Member # 20496) on :
TF,
Can you send me info about this Dr. H? Like what is his name and how much does he charge for initial visit and follow up visits.
Does he require frequent visits? I know, it's probably depends on the patients needs, but wanted to ask just in case. Does he return calls? Any info. would be helpful.
Thanks. :-)
Posted by TF (Member # 14183) on :
I sent you the doctor's name and answered all of your questions.
Hope you can go there and get good care.
Posted by j_liz (Member # 20496) on :
![[Frown]](frown.gif)