posted
My LLMD sent me to a neurologist and I saw him today. He ordered a brain MRI and some blood tests to rule things out.Blood test is for SPEP and IPEP something to do with white blood cells and cancer.So now I am really worried.
He also said I could have MS because of my symptoms.I told him about the Lyme and bull's eye rash I had 4 years ago. He did some tests and said I definitely have peripheral neuropathy but he doesn't know the cause. On Friday I am seeing the LLMD again. Right now my concern is this blood test and why he ordered it. Thank you.
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
Yes. They were good.My Vitamin D was 8.8 and I am taking 10,000 IU/day.
Posts: 54 | From catskills NY | Registered: Jun 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi mariana:
Our daugher had the peripheral neuropathy besides other neurological lyme related issues.
It was around 10+ months of treatment before some of the neurolicical isses started to ease up. Over 18 months for the peripheral neuropathy to disappear.
She was on Mepron & Zith for 2 years and tindamax was added for 5 months (at month 4 of treatment) b/4 she couldn't tollerate it any more.
We credit the tindamax for bringing her back to us.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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posted
Hi mariana:
On the D3 levels. I've done extensive research on this after our daugher was initially diagnosed with chronic fatigue and it is another area where MD's are behind the curve.
If the Hydroxy 25 level (your liver converts the D3 to the hydroxy 25) is less than 30 you are deficient and it should be at least 60 if not 80.
Gel or liquid are the only way to take it for the body to absorb.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Do you know what the actual B12 and Folate levels were ? Because the levels for 'normal' are set WAY to low, and you can get neurological problems from B12 LONG before you get blood changes.
Posts: 250 | From canada | Registered: Oct 2007
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posted
Hi Anne: I don't know the B12 and folate levels because I got this blood test separate from the other tests and I never asked the dr.for the papers but I will ask him for the paper with the results. Hi Tim: I am taking vitamin D3 but in pill form.
Neuro said I definitely have peripheral neuropathy. I couldn't feel cold or vibration on both hands and feet.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I was able to improve peripheral neuropathy somewhat by taking a B complex vitamin, sublingual B12, and Gotu Kola.
Actually, I tried the Gotu Kola because Keebler posted articles about it being good for cognitive function. After about a week of taking it, I noticed that it was easier to use my hands...I had been fumbling pills.
The effect of the B vitamins was dramatic...I had results quickly. When I tried a B100 complex, my numb toes improved the next day!
I tried a couple of different brands of sublingual B12, and the NOW Instant Energy packets reduced my leg pain. I had not even realized that my aching legs might be nerve damage from peripheral neuropathy.
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I don't care for D3 supplements in "pill" form - because if you look at sources of D in nature, they all come with fat - which is essential to D's absorption.
Cod Liver Oil is an excellent source of D, but I understand that there are some high potency D preparations that come in oil, that are very effective. Personally, I like the Carlson brand CLO, as we have had noticeably better results with this, as compared to other brands.
Dr. Mercola also has several articles that recommend particular brands on his website.
Nearly all natural sources of D come with Vitamin A. A really potent natural source of these two vitamins is liver - and native people in the arctic have used polar bear liver as a cure for "snow blindness," for millenia.
Other native tribes of North America have been known to seek out fish liver, and fish eyes, to improve failing eyesight.
Deficiencies in vitamin A are well known to cause night blindness.
What are some of the less potent, but reliable sources of D and A? Egg yolks and milk (especially whole raw milk from summer pastured cows). But the pasteurized/homogenized variety we buy today has had synthetic D3 added. This was done to prevent rickets in children, which is caused by a deficiency in Vitamin D. (And is certainly better than nothing!)
Both of these foods have been villified by the so-called "modern" nutritionists, whose cholesterol theories have not been founded in science.
Our bodies need essential fatty acids, and one group, The Weston A. Price Foundation, touts "nutrient dense" foods as the key to robust good health. See: www.westonaprice.org/
The WAPF's recommended diet, based upon native populations who do not suffer cancer, diabetes or dental problems, includes; Cod Liver Oil, whole raw milk, grass fed meats, fish, eggs, fermented vegetables, and bone broths.
OK I know I have digressed a bit from the subject, which is Vitamin D, but I tend to think that the foods that supported human life for millenia, offer the best nutrition.
Also - Please don't forget that Vitamin D is the "sunshine vitamin" and exposing one's naked skin to sunlight for 20 minutes or so, at the height of the day, will help your body make the BEST Vitamin D available - which is your own!
Homo sapiens traditionally lived outdoors, and thus, got plenty of sunshine/vitamin D. Our scientists are starting to realize that when the body can make 50,000 IU of D in ONE sunny day at the beach, their former recommendations for D must have been woefully indadequate.
Hope this adds to your understanding.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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posted
Carol -
That's really interesting that B vitamins helped with your neuropathy!
The main thing I noticed when I started taking B-complex was a big reduction in water weight. (I saw my ankle bones for the first time!)
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Just want to say that my husband became completely disabled by unknown etiology peripheral neuropathy. It was only after my daughter was diagnosed with Lyme and Co and I read Cure Unknown that I put 2+2 together and had him tested for Lyme.
He has Lyme, Bartonella and Erlicheosis.
2 years into orals and he is 60% better.
The neurologist doesn't think the PN could be from Lyme and is not sure why its getting better after more than 10 years.
Try not to worry about the tests. It's been my experience that most docs will go to any length to prove its not Lyme and Co.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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t9im
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posted
D3 needs to be a gel cap or liquid.
SAM's Club Simply Right 400 softgels at 5,000IU. I forget maybe 10 to 12 dollars.
Amazon - Carson's Ddrops 4,000IU a drop.
D3 in a tablet is not easily absorbed into the system and ends up being a waste.
The experts on D3 are Dr. Hollick and Dr. Prendergast.
D-3 is something our skin produces from ultra violet sun light and the liver converts to 25-hydroxyvitamin D (25-OHD) which has been proven to help with bone health (it is the cure for rickets), fatigue, colon cancer.
Once we enter the fall the sun�s rays are not strong enough for our bodies to produce the hydroxyl 25. 80% of North Americans are considered D-3 deficient.
I supplement with 5,000 units a day (the daily recommendation is 400 units) but remember it is not the # of units but your body�s ability to convert to the 25-OHD. You need to have a 25-OHD level over 60.
To make matters worse different labs can give a different answer. Quest it normally 20 below Labcorp so if at Quest one would need a level of 80.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you everyone for all the info. Along with the other tests, I am having my Vit. D retested.I am curious to see if it changed at all. Lymemom. i see what you mean by the doctors going to great length to show its not Lyme. I think neuro is convinced I am diabetic(cause of my neuropathy).I told him i got tested in April and July and besides my husband is diabetic and I check it from time to time. That was not good enough for him.I am getting tested for that also. Since yesterday I have checked my blood about 7 times and i'm not diabetic.
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
mariana, My neuro is the same. He even had my PCP do a blood sugar test for him when I went to see her. Negative, just like I told him. He's frustrated because he can't find the cause of my neuropathy. He took over 20 tubes of my blood looking for a cause, and found none. His only recommendation was to add riboflavin to my meds for 6 months as my levels were "low" and that can damage nervous system. I already take sublingual b-12 daily. Riboflavin is B-2. I bought some but I don't think it will help. I will see him again next month. All I can say is that the neuropathy is NOT better, in fact, maybe worse. (as I've been off abx for 8 or 9 months now) He began arguing with me about it NOT being lyme in my 1st visit, and NOT being MS too. He said I didn't have lyme because the "lyme titer" test they always do was negative. I told him "great,then what is it?" He has no clue. He did an EMG (my 2nd) proving the neuropathy. A previous doc had dx MS, which he promptly said no on. Great! I don't want MS!! He questioned me on "why do you think you have lyme?" and I told him because 3 docs have said so. Then I told him I was NOT here to discuss lyme with him, but only my neuro issues, period. He repeatedly ?'d me on lyme dx I had, to which I finally agreed to tell him that my llmd rx'd abx and vitamins. He giggled and rolled his eyes. After all his bloodwork and emg, he had nothing more to recommend to me than guess what? A VITAMIN!! I was like, Really? A vitamin??? Of course he had nothing more to say. Out of 4 neuro docs I've seen, none have been that helpful, I'm sorry to say. After 2 spinal taps, many, many tubes of blood, 2 MRI's, 2 EMG's, I STILL don't have answers from them. The only answers I ever got were from llmd's. period.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Since even your neurologists seem to be recommending certain B vitamins for neuropathy ... a word on the Bs.
They are synergistic meaning, they need each other to work (together).
Taking a high dose of ONE B vitamin can actually result in a deficiency of others ... and Adele Davis said our bodies will start robbing whatever stores of those "others" might be around (liver, kidneys, brain), in order to make the "high dose" vitamin work.
If you want to take extra of any B vitamin, start with a B-Complex and THEN add the higher dose of whatever. This way you are less likely to deplete some one or more of the "complex."
B-Complex 50 or 100 is great. OR make a smoothie with Brewers Yeast (nutritional yeast) which is an excellent source. Also liver or dessicated liver.
Bs are water soluable so they need to be replenished daily. Ms. Davis said B vitamin deficiencies are very common in this country, because what might be found in food (whole grains) is mostly milled away in processing.
I hope you will all find the key to regain your health.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
One thing my llmd told me about b-complex though. Many of his pt.'s, including myself, were getting levels too high in B-6 from taking the complex. I was on B-12 and Bcomplex because my parietal antibodies won't allow any B-12 to metabolize from my stomach, including those found in food or pills. Evidently, something with the lyme disease makes the b-6 too high in some people and can make you worse. I am probably not explaining it properly but I know that's what he said. Now, my daughter was taking b complex without those issues.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
Saw neuro and Llmd after my brain MRI. I don't have Ms which they both told me they suspected. I asked for copy of my blood work and this is what it says on it. B12=374 and folate =16.7. I know b12 is within normal ranges but I've heard it's better to be 500. My numbness and pain is so bad I can't sleep at night.it got worse.both doctors say they don't know what is wrong. PS : my vit.D went up to 33. Thank you for all the help.
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
I forgot to ask twice bitten: how was the emg test? I heard it is painful and neuro wants me to do it and a nerve test.
Posts: 54 | From catskills NY | Registered: Jun 2008
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posted
Yes, it's painful! I took a Xanax and a pain pill before I went in. Had to have helped!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I fail to see any reason to stick needles into the flesh and tissue of any person just to prove what that person already knows and what the doctor just doesn't want to believe without subjecting them to much pain.
The very painful EMG I had confirmed what I'd been telling them: I had pain, here, there, etc.
The pain endured was horrific. And I will never do that again. It's barbaric for someone who has so much pain to begin with - although, I've heard of others who were not bothered by it.
My policy now is no more painful tests. I know lyme can do "this" and "that" so I have nothing I need to prove to anyone.
OTHER testing that is not invasive or painful, go for it if it may help gather information that can help.
But too many doctors are too gung-ho on "tests" when some basic evalautaion / assessment processes will offer adequate detail. It what a good diagnostician can do with their intellect and experience - and your input.
With treatment, with support measures, so much can often be resolved and what can't, well, THEN we just do the best we can but I'll avoid any painful test to tell me what I already know. This is not just about enduring that pain, but that event is stressful to the body, not a help. ' Taking some of the OTC pain relivers (acetaminophen) or many of the drugs to help with pain can hurt the liver, too, by blocking glutathione.
Even xanax blocks glutathione processes in the liver and that affects the whole body. Even just one can have a cascading effect.
. . . XANAX . . . depletes the body of essential vitamins, minerals, melatonin and glutathione (the body's master antioxidant). . . .
. . . Benzodiazepines deplete approximately 50% of the glutathione from the white blood cells within five hours, and these cells defend our body from infection and foreign material. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Mariana,
Is the neurologist LL? It does not should so. Still, not everything is lyme so they might offer additional insight.
However, if not LL, they can't really be the best neuro for you if they don't know all about what lyme can do to a body. They must have that knowledge in order to work a proper diagnosis.
They need to understand chronic neurolyme. If they do not, they may be only of limited help. Still, they can't really do much, anyway, as long as lyme is in the picture.
A neuro is mainly to order tests or do surgery. As long as lyme is on your plate, a neuro is not going to be able to help.
Are you sure your LLMD is ILADS "educated" and current with all the ILADS information?
Are all coinfections being considered? Parasites and heavy metals, too?
I assume you've already been refered for cranial-sacral therapy? If not, I'd question your doctors.
For cranial-sacral therapy, though, it's vital to NEVER suddenly twist the neck or spine. THESE techniques do not do that and are safe for those with lyme:
UPLEDGER, FELDENDKRAIS - just Google to find practitioners near you. A D.O. who does Upledger may be covered by insurance.
Your local lyme support group may have names, too.
Ultimately, though, until lyme and all that goes with it is adequately addressed, pain may not resolve. And it has with many after adequate treatment for the cause. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Liver stress, damage and dysfunction can also cause pain, even neuro pain. I assume your LLMD has explained all that to you and has you on excellent liver support (I hope. If not, I'd question their expertise).
The TOXICITY of lyme & co. causes nerve damage. To help prevent toxic damage, liver and kidney support are essential. If glutathione is low, nerve damage can get worse. This is a vital factor to remember.
In fact, I would have hoped by now you'd be offered IV Glutathione. Still, what can help:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- t9im's post above about the KIND of VITAMIN D we take is very important. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
As per t9 im' post I am taking vit,D soft gels. I don't think neuro is LL but its my llmd who referred me to him. I am sure llmd is a real llmd. I have not heard of cranial therapy and no Dr. mentioned it. I don't think I was tested for co-infections but i am going to be tested for heavy metals. LLMD put me on doxy 200 mg twice a day. I asked what's supposed to happen and he said he wants to see if the numbness goes away. I am on my 6th day and so far no change.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Keebler
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posted
- "LLMD put me on doxy 200 mg twice a day" (end quote)
Is this the entirety of your treatment protocol for lyme?
If not yet assessed for coinfections, that's a huge matter.
What Liver support are you doing? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This past Sept. 13, you posted:
"My story started 4 yrs ago when I got a bull's eye rash and tested negative for Lyme and was never treated for Lyme. A few months ago
I started feeling very sick and went to a LLMD.I tested negative on the Igenex test.Doctor says I might still have Lyme. I am taking supplements like tox-ease but no antibiotics.
LLMD wants me to see a neurologist." (end quote)
Sept. 14, you wrote:
"Here are the results from Igenex. Everything negative except for the IgM Western blot: it is positive on the 41 and 66."
On Sept. 19:
"I agree that I should see a neurologist to rule out other diseases.
No, the LLMD did not give me abx. Maybe because he's not sure I have Lyme, I dont know. "
Feb. 18, 2013:
"I have been seeing a llmd for almost a year but treatment has not started because I did not test positive."
(mariana) -------------------
This just gives those who reply important detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I just checked and my Dr.is a member of ILADS.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, I certainly question the expertise of this doctor. You are not even being treated.
You had the classic rash 4 years ago, no treatment, classic symtoms, certain test markers (even if not positive, that RASH is the key) and you have not yet even been offered proper treatment.
In fact, you say that your doctor is not really even sure. Yes, there can be other things but it seems the lyme is being ignored.
200 mg of doxy twice a day does not constitute proper treatment for advanced neuro lyme. Although, it may be a place to finally begin.
But, you would not expect to see improvement for some time. The doctor should have told you that. And there would be much more of a full plan to follow. I hope. Or would he just leave it at that?
And, without cyst busting drugs, this can make lyme worse. Did the doctor tell you that you would soon also be taking a lyme cyst busting drug like Tindamax or Flagyl? This really matters.
Without the liver support to manage a herxheimer, success is not likely to be as good.
I would find another doctor who is really an LLMD. I don't think the one you see is. Does not sound like it - at all, actually. You deserve a better doctor.
Babesia, Bartonella, parasites, heavy metals all need to be considered, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Can I PM you his name? Maybe he is waiting to see if I get a reaction from the Doxy.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would not know, most likely. I'm thousands of miles away.
Have you communicated with all lyme support groups within 100 mile radius to this doctor? If not, do so.
Have you called your STATE LYME suport group to ask about this doctor? If not, that's a good plan, too.
I'm far from NY state, so maybe other posters here near to you can help.
You've been with this doctor a very long time time now. I don't think he's waiting to see if you get a reaction to doxy. However, if he were, he should have TOLD you that and outlined a PLAN of full action for time to come. He's not been doing his job for quite some time, it appears to me.
Now, with the legal pressures, that may be why. LLMDs in NY state (and everywhere, really) are feeling more pressure and if they treat properly, their licenses could be in jeopardy.
I hope you understand the politics of all this. Still, you need a doctor who is REALLY, TRULY an expert. And it sure sounds like your case has not received adequate attention. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Just being a member of ILADS is often a good indicator but not one that can be solely relied upon. Some members don't even keep up with conference materials. Find out if he has, though. And if he's presented or written anything relative to all this.
It helps to review anything a doctor has written, any presentations to professional groups and which ones he's attended relevant to your case. Still, I would sure see who else might be out there better able to fully treat you.
Tick-Borne Disease Alliance. Find a medical professional, scroll down for contact link.
--------------
NY State group
All support groups within about 100 mile radius to the doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Backing up, although you had the classic rash, symptoms and some markers in lyme tests, your doctor still seems hestitate to admit this is lyme.
When he says that (apparently repeatedly), did you two discuss this:
27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
And, most importantly: the classic bulls eye rash after a bite, your symptoms and history are a clear indicator.
Could he tell you if his boss or the state regulating agency requires him to put aside that detail?
Does he know everything in the set below? He should but some do not. Even a great LLMD can't be an expert in all categories but, somehow, a network has to be constructed for care.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
----------
PARASITES are now being seen by many LLMDs as the #1 co-infection in lyme "complex" --
Is your doctor willing, able and experienced enough to address parasites?
Some LLMDs find doing that first helps other treatment better succeed. And parasites can cause all kinds of neuro issues.
BABESIA & BARTONELLA also need to be considered with all neurological lyme cases. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Consider this space for a laugh. I wish I could crack jokes and make people laugh but all I can do is wish that now, you can take a rest, find some bit of enjoyment and then recharge a bit for some homework and calls tomorrow.
A lot is up in the air, so just stay grounded and breathe through it all. You have a chance at getting better, really.
Have you seen the documentary "Under Our Skin" some others with symptoms as yours did find success. Go for that. Hold on to that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
To tell you the truth, when I go to him he doesn't mention Lyme too much. I tell him what has been going on with me and he writes a lot. My ONLY treatment for Lyme has been the doxy.(except the detox I took for one month in July).I have not been told of any plan of action.He did not mention liver support. This may sound like a stupid question but are the babesia and bartonella tests different than the Igenex test I took. Basically I am feeling worse than when I first saw him last year.
Posts: 54 | From catskills NY | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
mariana,you need to get a REAL lyme literate doctor. Your "lyme doctor" has sent you to a neurologist who refuses to accept or even consider that you have lyme--which is TYPICAL of nearly every neurologist in the country. Your lyme doctor didn't do you any favor by sending you to such a doctor. Look at all of the money being spent, worries generated, etc. while this neurologist looks for another cause.
In general, neurologists are terrible to lyme patients. The one I saw acted just like yours and worse. Don't submit to anymore of his tests. He is refusing to see the elephant in the room.
And, your "lyme doctor" is not treating you properly. So, post in "Seeking a Doctor" for a good lyme doctor in the state of NY or other nearby states. The best lyme doctor in the nation is in Hyde Park, NY. If you want his name, send me a private message. Just click on the envelope icon above my post. Also, contact lyme support groups in your state for names. See Support Groups on left side of the page.
I hate to read what you are going through. It is paddling around in a mud puddle. You will only see improvement when you get to a doctor who will give you a course of lyme treatment (meaning AT LEAST 2 different antibiotics, at high dosages, plus all of the supplements that lyme patients need, etc.). Your treatment is inadequate.
I strongly suggest you read the Burrascano Lyme Treatment Guidelines found here:
Then, find a doctor willing to try you on a course of good lyme treatment. That will be the proof of what is going on. THAT is how lyme is diagnosed. Here is a quote for you from Burrascano that says exactly this:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
See the last sentence in this quote: "Another very important factor [in making a lyme diagnosis] is response to treatment...."
This is how lyme disease is diagnosed. After considering your symptoms and medical history, the doctor is supposed to put you on lyme treatment to see what happens!
So, get some good treatment. 400 mg of doxy per day is not going to make numbness go away, and will likely not cause any improvements or herx reaction either. What you are on is NOT good lyme treatment.
Here is good lyme treatment:
"COMBINATION THERAPY
Treatment of chronic Lyme usually requires combinations of antibiotics. There are four reasons for this:
...1. TWO COMPARTMENTS- Bb can be found in both the fluid and the tissue compartments, yet no single antibiotic currently used to treat Bb infections will be effective in both compartments. This is one reason for the need to use combination therapy in the more ill patient. A logical combination might use, for example, azithromycin plus a penicillin....
Apparently, Bb can shift among the three forms during the course of the infection. Because of this, it may be necessary to cycle different classes of antibiotics and/or prescribe a combination of dissimilar agents.
4. CYSTIC FORM- When present in a hostile environment, such as growth medium lacking some nutrients, spinal fluid, or serum with certain antibiotics added, Bb can change from the spiral form (�spirochete�) into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, Bb can revert into the spirochete form. The antibiotics commonly used for Lyme do not kill the cystic form of Bb. However, there is laboratory evidence that metronidazole and tinidazole will disrupt it. Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tinidazole) added to the regimen. More details are provided in the section on treatment options." (pages 12-13)
Have you looked at pages 9-10 to see the list of lyme symptoms?
You MUST educate yourself on this disease or you will waste an awful lot of time and money with no chance of getting well. That's just the way it is with lyme disease. Study this document and find yourself a doctor who does everything it says to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
This is a late stage case that is not being treated adequately and it seems probable that it is the political situation in NY that is the cause. There may soon be no lyme doctors in that state.
Posts: 2888 | From USA | Registered: Mar 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I think LLMDs are protected in CT? In any event, Mariana, pl remember that if you're in a lower income bracket you are eligible for gratis flights to medical appts from Angel Flights.
Keebler -- I had to laugh as you recounted your story about the EMT. When I went for mine, it was in a dirty dingy office; the doctor began with tests that weren't particularly pleasant but tolerable. When the doctor came out with that HUGE needle to go through my bicept -- I high tailed it out of her office. No way. There'd have to be a damn good reason to do that one.
If Mariana is testing vit d, could someone pl remind us of the story on one's body (w\ Lyme) converting one kind of D to the other -- one of them is D-25; they both require testing ...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I think I am finally figuring this out(thanks to this board). Since I tested negative, my LLMD is reluctant/afraid to treat me for Lyme.So then why does he want me to come back every month, just tell me "lady since you don't have Lyme there is nothing to treat and go find a regular doctor".
Posts: 54 | From catskills NY | Registered: Jun 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Mariana, if the LLMD doesn't treat you, you can still do some things that will improve your symptoms and help you feel better.
You can take supplements for symptoms that are due to nutritional deficits.
A good B multiple can help...the numbness in my feet got better the next day! Vitamin B12 can help...the pain in my legs got better several hours after the first dose!
Magnesium can relieve many Lyme symptoms, including anxiety, depression, headache, insomnia, panic attacks, muscle twitches and spasms. The Lyme bacteria live in our cells and use up the magnesium, causing us many problems.
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