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» LymeNet Flash » Questions and Discussion » Medical Questions » So you say you're, "NOT Getting Well"

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Author Topic: So you say you're, "NOT Getting Well"
Jellybelly
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I just read this morning of someones story on the board that after 6 YEARS of ABX, they are back at square one. How discouraging this must be.

This is not a seldom heard experience. This scenario keeps screaming to me.....what are we missing here? Am I the only one?

I know, I know, massive ABX are what the top dog Lyme specialists recommend, but is it working for you? How awful to have gone through years of ABX, only to not only find you still have all the same problems but now you have a whole host of new ones caused by the damage done by all of the powerful ABX you've been ingesting.

BELIEVE me please when I say, that I do think ABX likely need to play a role in regaining our health. But still why are so many hitting a wall?

Is there anything that we could do to change this outcome? Is there anything we could add to our present protocol which wouldn't create further damage and help us actually get well.

I have said this before, and I am going to say it again, because not enough people are recognizing the importance of dealing with HYPERCOAGULATION.

Please consider this info. The kind of hypercoagullation that I am talking about is the excess buildup of fibrin. The production of fibrin is a usually healthy occurance. It can wall off infection preventing it from spreading further. The problem is when there is chronic infection this fibrin production continues on and on causing a gooey, sticky mess. All kinds of crud accumulates or hides in this goo, including viruses, bacteria and even cancer. Remove this goo/fibrin and these unwanted bacteria, viruses or cancer have no place to hide and proliferate.

Here is some info supporting what I am saying.

viruses and fibrin

It has just recently been discovered that one test to discover if your body is under a viral attack (whether stealth or otherwise) is the c-reactive protein test. This test will tell you the coagulability state of your blood. A body under attack by a virus has hypercoagulable blood (clots easily). (Again, this is because viruses hide from the immune system by "cloaking" themselves in fibrin). Stealth viruses do the same. This is how some of the stealth viruses were initially found: the c-reactive protein test showed positive, yet the individual had no signs of a fever or viral infection.

bacterail defense against immune system

As already mentioned, some pathogens can hide their unique antigens from opsonizing antibodies or complement. Bacteria may be able to coat themselves with host proteins such as fibrin, fibronectin, or even Ig molecules. In this way they are able to hide their own antigenic surface components from the immunological system.

S. aureus produces cell-bound coagulase and clumping factor that cause fibrin to clot and to deposit on the cell surface. It is possible that this disguises the bacteria immunologically so that they are not readily identified as antigens and targets for an immune response.

bacterial virulance

When these bacteria are inside tissues they elaborate various toxins/enzymes that facilitate its colonization
Enzymes
catalase - breaks down H2O2
coagulase - this clots blood and coats the bug with fibrin
hyaluronidase - spreading factor
staphylokinase - slowly dissolves clots
plus various other proteases, lipases etc

immunosupression and camouflage

Antigenic disguise is another simple camouflage tactic found in nature [1437]. Pathogens may hide their unique antigens from opsonizing antibodies or complement by coating themselves with host proteins such as fibrin, fibronectin, or immunoglobulins. For example, S. aureus produces cell-bound coagulase [1723], which binds to fibrinogen [1724-1726] and prothrombin [1725-1727] and activates it to form staphylothrombin, causing fibrin to clot and to deposit on the cell surface [1725]. This may immunologically disguise the bacterium so that its natural immunogenicity is not recognized as a target for an immune response.
=================================================

Here are numerous reasons why you should really look into hypercoagulaation. There are other really good reasons. One is that the primary treatment for excess fibrin is heparin, yes, heparin, is also believed to possibly kill Babesia and possibly Lyme all by itself!!!!

heparin inhibits babesia

National Research Center for Protozoan Diseases, Obihiro University of Agriculture and Veterinary Medicine, Inada-cho, Obihiro, Hokkaido 080-8555, Japan.

We examined the inhibitory effects of three heparins on the growth of Babesia parasites. The multiplication of Babesia bovis, B. bigemina, B. equi, and B. caballi in in vitro cultures and that of B. microti in vivo were significantly inhibited in the presence of heparins, as determined by light microscopy. Treatment with various concentrations of heparin showed complete clearance of the intracellular parasites. Interestingly, a higher percentage of abnormally multidividing B. bovis parasites was observed in the presence of low concentrations of heparin. Furthermore, fluorescein isothiocyanate-labeled heparin was preferably found on the surfaces of extracellular merozoites, as detected by confocal laser scanning microscopy. These findings indicate that the heparin covers the surfaces of babesial merozoites and inhibits their subsequent invasion of erythrocytes.
================================================

I know that many are really concerned about heparin and that they could bleed to death. This really isn't an issue with the low doses that are given. Heparin is a NATURALLY occuring substance in the body, unlike ABX. We already make heparin, but part of the viscious circle that we are in includes the receptors which singnal when it is time to produce more heparin become covered up by the goo. They can't sense when more heparin is needed to thin the blood.

Of course as always, you need to discuss this with your doctor. If you and your doc think this is a route you will need to pursue, he can either prescribe heparin or there are a growing # of natural enzymes that just eat right through the fibrin. The choice is yours, but by all means, if you aren't making progress and even if you are only making SUPER SLOW progress, hypercoagulation may be the reason why. If it could mean 1 year of ABX and good health as opposed to 6 years of ABX and still filling crappy, isn't it worth investigating?

[ 06. July 2006, 12:33 PM: Message edited by: Jellybelly ]

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Lymetoo
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Treating hypercoagulation worked for me!! [Smile]

[ 05. July 2006, 03:04 PM: Message edited by: Lymetoo ]

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Opinions, not medical advice!

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Jellybelly
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already done [Wink]
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kelmo
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Jelly, you bring up an interesting point. Last time my daughter had to have a blood draw, it took about 30 minutes to find a vein, and the blood came out thick and dark. Is that hypercoagulation?

If that's the case, and I can see some merit to the study, then we should think about that. My LLMD is pretty good about listening.

One thing he is adamant about is NO MAGNESIUM. The bacteria use it as a building block for their biofilm. After they die, the magnesium releases.

I know that I've said this before, and it causes a stir, but I can see a difference with my daughter NOT doing espom salt soaks.

I will ask about the hypercoagulation. That is a concern.

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duke77
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Are the tests for Hypercoagulation the ISAC and ITP?
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luvs2ride
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Kelmo,

Did you mean a negative or positive difference when your daughter does not do Epsom Salt soaks?

When I soak, my joint pain increases significantly for days.

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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5dana8
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Kelmo & luvstoride

Are you sure its the epson and not the heat soaking in a warm tub?

Lymetoo & jelleybean

If you can't get your hands on heprin may I ask what do you take that helps?

Thanks [Smile]

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5dana8

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cantgiveupyet
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what is the blood test for this.

I had a PTT done before a surgery recently and mine was low.

thanks

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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kelmo
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It's definitely the epsom (100% mag), she looked like an inflamed red balloon for the two months she used it. She is going to get magnesium in some foods, we can't avoid that, but we don't need to supplement.

Maybe it's just the bartonella that uses it for it's biofilm. I can only tell you from our experience that his observation is correct.

It's been positive getting away from it. The sauna has been most helpful.

Boy, this is an expensive disease!!

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Lymetoo
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The ISAC is the test you need.

dana....I take lumbrokinase now. You can also take nattokinase or serrapeptase too.... even bromelain will help.

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Opinions, not medical advice!

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cantgiveupyet
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thanks lymetoo!

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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GiGi
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The fibrin problem is just one and you made a good case for it, J. However, RechtsRegulat, an enzyme-rich extract of fermented fruits and vegetables, works beautifully for it. Dr. K. says it has outperformed the s.c. injection of heparin in their own trials. I wish it had been available when I was still building fibrin.
Anyone interested can do a search here. It clears your blood beautifully. It cleared the black sticky blood, I was watching it done , in about five minutes. As someone else just said, trying to draw blood that is dark and thick -- it literally turned light and flowing almost instantly after a swallow of Rechtsregulat (tastes a bit like mild vinegar). Dr. K. stopped the heparin also because a number of his patients started to turn allergic to it.

However, as Dr. K. said years ago, one has to
"Look beyond Antibiotics" www.neuraltherapy.com/articles

Major hang-up: The body has to be cleared of heavy metal toxicity. Microbes set up their housekeeping in areas which have become toxic. These areas are not patrolled by the cells of the immune system, who are equally vulnerable to toxic substances as other healthy dells of the organism are. Many microbes have learned to live and flourish -- f l o u r i s h - in the presence of high levels of toxins.

Microbial by-products and toxic metals act as haptens: they attach themselves to the cell wall and mark this cell for the host's immune system as foreign. This cell will become a target for the immune system and will be attacked. (this is the base for most or all auto-immune diseases).

Just some to be paid attention to:

Viral infections
Mold and fungi
Food allergies
Parasites are a major problem for all chronically ill
Heavy Metals affects all chronically ill
Chemical toxins
Dental toxins / hidden dental infections causing enormous problems that no one would suspect
especially wisdom teeth sites (with or without teeth)
Emotional garbage
Structural problems that hinder lymphatic drainage
Geopathic stress
Electromagnetic stress, especially nearby microwave towers

If you miss addressing these, mainly heavy metals and dental, - Lyme Disease can persist for a very long time.

Take care.

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Jellybelly
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Kelmo, thick dark blood is something commonly seen in hypercoagulation. Before receiving treatment my blood glubbed into the vile when being drawn. I often clogged the needle before the vile was full, require sometimes 2-3 more sticks just to fill one vile. It was dark and really dirty looking. Now, it is crimson red and flows quickly.
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lymemomtooo
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Just addressing a heparin problem..I had a friend that was diagnosed with vacilitis..Last week it was discovered that due to decreased blood flow, part of her intestines had to be removed.

She was given heparin, after surgery, to prevent any blood clots and had a bleed out in the brain and was dead within 24 hours.

I suspect it started as lyme disease but 2 of us really got no where trying to convince anyone. We will never know. So if on heparin make sure you are in the hands of a knowledgable llmd or specialist.

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Nal
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thanks-Ill bring this info up to my LMD.

Nancy

ps. Wouldn't they know already if my blood had a coagulation problem when they draw blood?

Nancy

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Life is 10% what happens to you, 90% how you respond to it!

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kelmo
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This has been very thought provoking. Thanks Gigi for the natural alternative. I think we will give it a try.

How do you get rid of metals? Is it those foot pads? EDTA? I hear that's also used for chelating metals.

My daughter has has three root canals and all four wisdom teeth removed in the past two years. I couldn't bear the thought of having those teeth pulled and leaving her gappedtooth. Is there something that will address that issue?

She has had terrible jaw clenching since this disease started. It has fractured almost all her bottom teeth. We got her a night guard and she has already ground through it.

Again...this is an expensive disease.

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Lymetoo
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quote:
Originally posted by lymemomtooo:
So if on heparin make sure you are in the hands of a knowledgable llmd or specialist.

I'm very sorry to hear about your friend, LMT. What a sad thing!

The heparin given for hypercoagulation is WAY less than that given in the hospital for blood clots.

Also, your dr would test your blood every two wks at first, then every month once the dosage is right.

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Opinions, not medical advice!

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Jellybelly
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Cantgiveupyet, a PTT test was one of the first tests my doctor ran on me to look for indicators that hypercoagulation was a problem. Having a LOW PTT IS and indicator of hypercoagulation.

He explained it this way. He said normal range was between 27.9-33.00 and I think those numbers indicate seconds. Mine was 25.2. This indicatd that it took just 25.2 seconds for my blood to coagulate. He said basically at 25.2, my blood was more viscous or thick, like oil subjected to the cold. Blood within the normal range would be thinner and blood at 33.00 or above would be considerably thinner.

There is a very IMPORTANT point people need to know and that is that even if your blood seems to be thin or maybe you are a genetic bleeder, you can still have this form of hypercoagulation. There is more then one part to the coagulation cascade, fibrin is just one part, then there is platelet activation as well. They are different. This coagulation problem that I am talking about is "acquired", meaning it is there because of the infection. A normal PTT alone may not be enough reason to not have the ISAC. There are other symptoms that seem to be very common with ISAC/hypercoagulation.

It is entirely possible that you have othere genetic clotting disorders as well, and when you test positive on the ISAC panel, they generally recommend looking into the genetic possibilities. I was tested for these and was negative as is often the case, so mine seems to be 100% due to the infection alone.

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bugabooboo
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LymeToo

How much Lumbrokinase are you taking?

At $60 a bottle, I don't take 6 tabs/day. But I feel as I have been rifing my hypercoagulation has worsened.

My fingertips are red to purple.

Thanks,

Bug

--------------------
Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom

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bugabooboo
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Gigi,

What is the dose of RechtsRegulat?

How much $.

How long does a bottle last?

I looked up a site in Germany. Isn't there somewhere in U.S.A. to get it?

Bug

--------------------
Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom

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SForsgren
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Finally! A good thread without a focus on antibiotics. These are too rare and critically important.

I agree that hypercoagulation must be addressed. I also agree with GiGi on parasites, metals, etc. All important.

It is unlikely that antibiotics will cure Lyme disease in my opinion. They are part of the puzzle but not the sole solution.

--------------------
Be well,
Scott

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kelmo
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Oh, I agree with you, our own immune systems need to be boosted to take over where the antibiotics stop.
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GiGi
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Rechtsregulat has been discussed here many times.
Would suggest a search here.

http://www.enzymfit.de/Accessible_Enzymes.pdf

This link gives you the 100 page booklet telling how to take it, what you can use it for, etc. Take as directed in the beginning, then you can cut back to 1t 2x a day.

It works on a thousand other problems besides dark thick sticky blood. When I sew or in the kitchen and I prick myself a bit, that's my test. It flows read, thin and not like molasses.

This is what Dr. K. says about fibrin, nattokinase, lumbrokinase, and Rechtsregulat. Don't waste your money on Bromelain. If you want to help your body overall, Rechtsregulat gives it to you 100-fold. Consider the health of your organs - and do print out the booklet - you will be referring to it many times if you really discover the value of Rechtsregulat. It is effective in every part of your body. Protect your liver, protect your gallbladder and protect the kidney - you have only one of them and they are supposed to last a lifetime. ABX and pharma drugs are doing a darn good job at stressing the system - every time you take one of these toxins, your body has to work overtime to get rid of the residue.

Dr. K. finds the residue of abx in people thirty years after they have taken them. Dr. LC is also of the opinion that you cannot detox heavy metals until you detox the remainders of the sulfa/abx. Then you have a chance at detoxing some other very, very toxic stuff.

Biopureus.com carries Rechtsregulat. Separate the good from the mediocre. I used to beg my friends in Germany to send us this stuff before it was available here.

Here is Dr. K's comment re fibrin from his website, www.neuraltherapy.com/articles.

Dr. K's words:

"The immune reactions are largely depending on host factors, such as genetics, prior illnesses, mental-emotional baggage, early childhood traumatization, current exposure to electromagnetic fields (sleeping location, use of cell phones, poor wiring in car or home, etc), food allergies and diet, socio-economic background, marital stress etc.

1: Anergy - the absence of reaction due to the successful evasion of the host-defenses . One of the more known mechanisms the microbes use to create anergy is hypercoagulation. The microbes tend to live in the endothelium, where the food is most abundant. They trigger the host's coagulation mechanism to lay down a layer of fibrin on top of them to evade recognition by the immune system. etc.

For this aspect we use 3 techniques: a) the KMT-microcurrent technology and homeopathics to wake up and entrain the immune system

b) Rechtsregulat (``right rotatory fluid'') which is an enzyme rich extract of fermented fruits and vegetables (14). It has outperformed the s.c. injection of heparin in our own trials. Lumbrokinase is far more effective than Nattokinase. Both appear weak when compared to Rechtsregulat.

We also test the client's system for geopathic stress, EM stress, food allergies, emotional factors, interference fields such as scars and disturbed ganglia and we substitute vitamins and minerals based on ART testing
c) the Enderlein remedies (especially the haptens) from Pleomorphic-Sanum

Take care.

P.S. Kelmo, am not clear on what you said. Are her teeth gone, pulled, removed, or are they still there? Will be back later.

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Lymetoo
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bug...I'm taking 2 capsules per day. Sometimes I take Rutozyme or serrapeptase for the second dosage. The lumbro is rather expensive.

--------------------
--Lymetutu--
Opinions, not medical advice!

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kelmo
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quote:
P.S. Kelmo, am not clear on what you said. Are her teeth gone, pulled, removed, or are they still there? Will be back later.
She had all four wisdom teeth removed a little over a year ago. Last summer, she had two fractured lower teeth caused by jaw clenching and grinding when she sleeps. We had root canals and crowns put on those.

From what I read on this board and others, that those sockets are a breeding ground for the bacteria. But, I don't think I could stand to have those opened up and left just so bacteria won't be trapped in those areas. There has to be another way to address that issue.

Any ideas?

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GiGi
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Kelmo, go to this website:
http://www.altcorp.com/AffinityLaboratory/rcttreatment.htm

This is the site of a very successful team (university of Kentucky). Both Prof. Boyd Haley and Bob Jones (both have testified before US Congress on mercury, etc). They had a grant from the British and tested a large number of root canals (from ALS patients) - and could not find a single one that was not toxic. Our ALSLyme friend who passed on recently wrote to me end of last year that he had a root canal that was giving him horrible problems. He had other dental problems that he was really concerned about. Apparently all efforts were too late.

Any patient that Dr. K. sees with a chronic disease from simple to cancer, the root canals are the first to go, because they are contributing toxins that are more toxic than any toxin known to man. I have posted about this forever and I had 12 root canals myself. I am only sitting here talking to you, well and healthy, because I had these teeth taken out.

Bob Jones, the fellow who designed the Cavitat, told an audience of about 150 MD's and others that he has never seen a health root canal.

If you daughter is ill and has trouble getting better and well, you may want to do some more research. I lived with 12 of them until I got bit by a tick; some people die because of one root canal.

I really don't like to put it like that - but that's facts from those who treat and from those who have done the research. Bob Jones himself also had root canals some years ago and was wheelchaired with ALS. He had to have some 30 operations to remove everything. They do cause the infamous cavitations.

http://www.thehealingjournal.com/articles/articlev11a02.htm

With good wishes -

Take care.

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heiwalove
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GiGi-

i am lucky and have not yet had a root canal. for future reference, though, what is the safe alternative? what should i do instead if a dentist says i need a root canal?

thanks so much,
heather.

--------------------
http://www.myspace.com/violinexplosion

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lymeout
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My daughter is on lovenox - low molecular weight heparin- and nattokinase. Two questions for those who have been through it:

Did you experience herxing as the fibrinogin dissolved and bacteria/toxins were exposed?

If you use Rechts-regulat, would you mind sending me a pm, telling me who your doctor is? Especially if it is an ILADS doc? I have been trying to get our doctor to look into this for a long time, and even afdter studying hypercoagulation extensively, he is strictly adhering to the above protocol.

Thanks!

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TX Lyme Mom
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Hey Folks,
Try not to get too side-tracked with only just hypercoagulation and forget to take a look at this exciting new topic on Gluten Intolerance (Celiac disease) which LymeToo posted and which is on the board right now. I suspect it holds a lot of promise for anyone who hasn't been successful with long-term ABX.

Here's the link to it for your convenience.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=045457

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cmichaelo
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Another reason for the thick blood, and I would think even major reason, is the low body temperature many of us have.

Low body temp causes blood to thicken and obviously makes it difficult to reach extremities, incl the brain.

Furthermore, extremities will generally be colder than your tongue temp shows, because yes they are at the extremetity and thus more susceptible to heat loss. I would think this further aggravates the situation.

I did the following to address my own low body temp and thick blood.

I took Nattokinase to reduce blood clotting.

I drank, and still do drink, ginger tea. Lot's of it. Ginger warms up your body.

I drink other kinds of hot teas (sage, chamomile, licorice, st johns worth) because anything hot that enters your body will obviously heat it up.

I don't drink anything cold.

I eat really spicey hot foods. This will cause you to sweat.

I dress warmly, even on a hot summer day I wear at least two t-shirts.

Do saunas and hot baths and submerge your head in hot water for as long as you can (with someone nearby to monitor your well being.)

Excersice like running will also elevate your body temp.

Getting enough sleep will also help to elevate it. To promote good sleep, take a mild sleeping pill (e.g., Ambien or Lunesta), and/or drink Sleepytime or Bedtime tea 1-2hrs before you go to sleep. Also taking B-6 will help improve your sleep.

In short -

DO ANYTHING YOU CAN TO INCREASE YOUR BODY TEMP TO GET THE BLOOD FLOWING SO THE ABX AND SUPPLEMENTS CAN DO THEIR JOB AND TO MAKE YOUR BODY AN UNHAPPY HOME FOR BB WHICH DOESN'T LIKE NORMAL BODY TEMPS.

It amazes me that LLMDs do not address the low body temp, but simply just prescribe abx. IMO, and I'm not a Dr., it's brain dead.

If your body temp is not normal, how can you expect your basic bodily functions to perform as expected, incl your immune system. Don't we all know that the body's functions start shutting down when the body temp goes low???

My LLMDs (three of them) used to take my temp. At times it was 95F. They didn't even comment on it...except one said, "We see this often in Lyme patients. Isn't it strange that Drs really only check the temp to see if it's high, but that when it's low they are not concerned?" OMG, and neither was he apparantly concerned. Just another symptom to him.

Amazing how the simplest things we can do something about are not being addressed by the doctors. The body temp is one example. Our eating habits is another example which has a tremendous impact on recovering from Lyme. Detoxification and lymph system are yet other examples.

No, the LLMDs seem to think in one dimension only. Abx, abx, abx. And then they are amazed when it fails.

Abx has to be taken/given when the body is ready for it! And sadly it predominantly up to the patients themselves to precondition their bodies. But how many patients know how to do this and why to do this and how many patients would even question what the Dr prescribes?

The whole thing just makes me angry. Where's quality control around here???


Michael

--------------------
I'm not an MD. The above is IMO and in my experience as well as from health related books.

I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before.

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minimonkey
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Wow -- thanks for the super-informative links!!! I have benefitted so much from all the science that is posted here -- you guys are the best!!

In defense of LLMDs, etc. -- Not all of them are entirely abx focused. My LLNP uses a combination of abx/pharmaceuticals and supplements/"alternative" treatments, etc. She is completely open minded to any and all approches that don't appear dangerous to her, and likes it when her patients share shat has helped them.

I'm *absolutely certain* that my rapid recovery to date has been about 50% due to abx/pharmaceuticals, and 50% due to the supplements and herbs I am taking based on all the research I've done and LLNPs recommendations.

I don't think abx/pharmaceuticals alone would have been enough to wipe out infections that have been present for at least 18 years, and more likely since birth (38 years).

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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cantgiveupyet
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excellent post cmichaelo - I agree with you.

my body temp was 93 for about a week.


One time i was at my PCP and the PA couldnt get my temp to read on the thermometer. She said ah well.

I used to be extremly heat intolerant...then that went away about a month ago....so now i try to stay in the heat and sweat as much as I can.


Im not sure why they ignore the low body temp....and also wish more llmd would look at the whole body and what lyme does to it. Seems only the top docs address this and they are booked for years.

--------------------
"Say it straight simple and with a smile."

"Thus the task is, not so much to see what no one has seen yet,
But to think what nobody has thought yet, About what everybody sees."

-Schopenhauer

pos babs, bart, igenex WB igm/igg

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tempe
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Jellybelly, Did you use heparin injections, or troches?

What dosage did you find effective?

Thank you.

Tempe

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Jellybelly
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Tempe, I didn't use either, I used a nasal spray that my doc had a compounding pharmacy make up. It was very, very easy to use. No needles, and no taste or trying to suck on sommething without chewing it. Minor annoyance that is, but nasal spray, just squirt and go.

As to how much, I don't remember. Hemex would be able to tell your health care person that info. I do know that it would vary a little when I was on ABX. Hypercoagulation always got worse while treating. I think others have noticed this too. When that happened, I would just increase my dose by a squirt or so. Then when I was off ABX I could back down again until, I didn't need it anymore at all.

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karatelady
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I would like to know too along with Heather about what the safe alternative is to the bad root canal.

I guess I've missed the answer (very possible with lyme brain) because whenever someone asks, I never see an answer.

Please tell us - GiGi?

Sandy

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GiGi
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Heather - Karate, sorry to say there is not much of an alternative for root canals. A dead tooth is a dead tooth. The biocalex they were using in recent recent years instead of gutta is also failing.

http://www.altcorp.com/AffinityLaboratory/rcttreatment.htm

These are the experts on that subject and they have no better answer.

Bridge and crown - stresses the other teeth and only leads to more root canals later on. That's how many people end up with too many. If I had the problem, I would go for a partial for that one missing tooth. If you lose another one, hopefully not, it can be attached to the same partial. If you have a metal problem, or neuro problems, the partial can be made out of other than metal materials.

Sorry I have no better answer. My son lost one molar because the infected wisdom tooth site spread, and he has had a partial for years with one tooth attached to it. He is very happy and without worries with that solution. It's not a good idea to go without replacing the tooth, because it changes the bite and teeth start to shift and many a backache start with that. Structure in the mouth is important for lymphatic drainage from brain/tonsils, etc. etc.

Take care.

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humanbeing
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GiGi ---Where do you buy Rechtsregulat? Is this the same as another product in the US??

Cant find it anywhere...
Thanks,
Kim

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

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Jellybelly
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^^^^^for those getting no response
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serendipity
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Humanbeing,
did you check the biopure website?

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typhoon_sheri
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Wanted to bring this site up again as I found it so very very interesting........

I see a doc who will not deviated from the norm.

I was in the hospital 11 days with a clot, and am now on Comadin.

The thought of being on Comadin for 3-6 is scarey to me.

By the way I was on a Heparin bag of IV every 12 hours so I prayed it would attack my babesia. No progress with that, that I can see
It makes so much sense to clear the bloodways of all our junk !

Opinions please.........
How much of the herbal "blood thinners" do you take?

Forgive the spelling but I have a bottle of Lukobronese (?) here at home that I have from a Fibro and Fatigue Clinic that I started with.
Is it so powerful that I could not incorporate it with Comadin ???

I have been to 3 Docs in the past year and 2 who are LLMD's and no one mentions detoxing !!!

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Jellybelly
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up
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Kendrick
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Treating Hyperflagulation helpted me.


 -

--------------------
Never walk through a cornfield backwards.

About me(Yahoo): http://360.yahoo.com/profile-NR1Y8cw6fqhtrewwItSlfsgQDIhaOojd

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Cathy DeVoe
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Hey everyone,

My LLMD put me on Boluoke (Lumbrokinase) immediately after testing me for a clotting disorder.
It was one of the first tests she did.

Believe it or not it is a proprietary earthworm protein extract.

I was amazed but she said it has proven to have no side affects for Lyme patients and interacts well with other supplements.

After 5 weeks of several capsules daily I can now say my clotting problem is cleared up.

I now only have to take 1 tablet daily.

"Boluoke is a clinically proven fibrinolytic agent, and is an excellent complementary supplement for restoring and maintaining circulatory health.
Its effects are supported by human clinical data, and it has been shown to be safe, effective and well tolerated"

I buy it through my LLMD for $96 for 60 tablets which will now last me for 2 months.

But the website is www.canadaRNA.com

Worked for me!

[woohoo] Catrina

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Cathy DeVoe
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Another thought on this subject.

My LLMD has been very into detoxing but very slowly....those darn herxes y'know.

So I have been doing a range of her ideas and I think they help.

Massage and Lymphatic drainage, also infared sauna and acupuncture.

I had to stop the lymphatic drainage for awhile since I couldn't walk for 24 hours afterwards but will start again soon.

Amazing how something so gentle can have such a strong effect.
Just thought of something..... I wonder if the lymphatic drainage will go smoother with my clotting problem taken care of?? Hmmmmmm

Also I overdid it on the infared sauna one day (it felt so darn good at the time!) and couldn't move for 2 days.

But I do think it really is helping me stay a little ahead of the die off.

So I have learned my limitations but my LLMD and my naturopath strongly goes for the detoxing.

The Detox Queen of Seattle....Cathy [hi]

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Marnie
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Hard to hit the fibrin issue when Mg levels are low.

Mg also has a fibrinolytic action [13], prolongs clotting time, delays peak thrombin time [15], slows down platelet clumping [27] and appears to reduce fibrinogen levels, all of which may prevent development or extension of an infarct.

http://www.mgwater.com/browne01.shtml

Botanicals with fibrinolytic properties:

Bromelains Garlic, Onion Inositol
Capsicum Ginseng (Panax) Nicotiana

"Be aware that you can deplete your stores of magnesium and potassium by ingesting too much salt..."

From old files (so links may not still work):

Magnesium and coagulation

``Insight into why Mg supplementation during pregnancy protects both mother and fetus, while high Ca intake does not, is provided by elucidation of pathogenic mechanisms of eclampsia, which involve placental pathology -

caused by platelet aggregation and adhesion and enhancement of the coagulation cascade, which enhance likelihood of thrombosis, and by endothelial damage with release of vasoconstricting thromboxane.18,19

These reactions are inhibited by Mg,20-22 while Ca has reciprocal effects.21

It has been hypothesized that low Mg is the unifying factor in pregnancy pathologies, and that early Mg supplementation might prevent much pregnancy-induced disease.24''

http://www.mgwater.com/dietary.shtml

``In the process of blood coagulation, magnesium and calcium are actually antagonistic. Calcium basically promotes this process while magnesium inhibits it.''

www.thinkmuscle.com/articles/jalali/magnesium.htm

"Recent work has demonstrated that administration of magnesium reduces platelet aggregability in healthy volunteers. [2]

It also inhibits fibrinogen-mediated platelet aggregation, which plays a crucial role in acute thrombotic events.[3]

Gawaz et al[3] have demonstrated that platelet aggregation, fibrinogen binding, and expression of P-selectin on the platelet surface are all effectively inhibited by intravenous magnesium supplementation."

http://www.barttersite.com/mgcardiac.htm

"The spectrum of magnesium activities is impressive, indeed.

For instance, magnesium inhibits platelet aggregation (quite like aspirin); thins the blood (as does Coumadin); blocks calcium uptake (such as Procardia); and relaxes blood vessels (as do ACE inhibitors).

Of note, magnesium increases oxygenation in the heart muscle by improving cardiac contractability.

It is for this reason that it is used frequently in emergency rooms to manage atrial defibrillation."

http://www.vitaminretailer.com/SIE/articles/HeartHealth.htm

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Annxyz
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A cheap way to treat the fibrin/ coagulation problem : plain old turmeric capsules

For more HELPFUL info go to the "cheap help " website . Google : " cheap help Ken Lassesen"

Lassesen's site is practical and offers inexpensive ways to deal with a variety of issues . Turmeric worked well for him and his family .

Because of the great benefits of turmeric, I order from Puritan's Pride and the cost is low.

--------------------
ANNXYZ

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Karenelee
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Annxyz,

Thanks for the comment on turmeric. I had some vague memory of it being anti-coagulant, and anti-inflammatory.

I started taking it a month ago after asking my llmd, and she said sure. I though perhaps it would help with the fibrin issue, but she hadn't heard of that possibility.

A naturopath later told me it was good -- but didn't say why.

I'm also doing the cholestyramin detox bit, on llmd's advice.

I do so want to beat this thing, or at least, feel better.

Karen

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Lymetoo
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quote:
Originally posted by Cathy DeVoe:
I buy it through my LLMD for $96 for 60 tablets which will now last me for 2 months.

But the website is www.canadaRNA.com

That's WAY too much for that bottle!!! Isn't it cheaper on the website you posted? I know I saw it online for $55.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Jellybelly
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up for those interested in hypercoagulation
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w0tm
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Low body temperature is VERY common with those who suffer from Lyme and other ISD's. There is a reason for this.

I've posted (too) long explanations of what/why/how concerning low body temperature in the past and I still believe it is a major (almost) undiscovered key to feeling much better even if it doesn't help with Lyme (the "jury" is still out on that one).

The condition is called Wilson's Syndrome. If the immune system is hammered hard by a serious illness for a long period of time, the body "forgets" how to regulate itself (turn thyroid T4 into T3 but no need to explain all that now).

My body temperature had dropped to 93 degrees, my body was highly toxic with a pH of 5.5 (scale is zero to 14 with seven being neutral between pure acid and pure alkalinity). Have that happen and your metabolism slows to a crawl. Your body will almost always detox naturally but it has to be "running" correctly. A low body temperature is like 80 weight oil in a car engine. Slow as molasses.

The fix is easy. But first make sure you are affected. Take your body temperature one hour after dinner for a week. If it averages below 98.2, you need help. Armour thyroid (AT) will fix it for most people.

Those who cannot handle the extra T4 of AT can instead buy pure T3. After two months of 120 mg 2x a day of armour thyroid, I gradually returned to 98.6 degrees. I still have Lyme but my body is now naturally detoxing. My remaining fatigue is now only from lack of sleep due to the night sweats of Lyme. I have energy again and foods again taste like food! I know several not major but annoying ISD's are now either minimal or gone. My body can now concentrate on Lyme.

Before, with my body so acidic, everything tasted metallic. If anyone wants the long write-up I posted in the past on this subject, PM or e-mail me and I'll be happy to e-mail it to you. [email protected]

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Jellybelly
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wOtm, I think what you are talking about is a very different issue then hypercoagulation. While they both can be related to the Lyme, they're different. Both should get better with eradication of the microbes.

One major difference is that treating the hypercoagulation will help to get rid of the infection which will get rid of the low temp, etc. Because, one, your immune sytem can manage it or two, the abx have a better chance of working.

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Marz
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Great information here and I haven't taken the time yet to read every word, so maybe this was covered.

Isn't an extremely low sed rate also indicative of hypercoagulation? My C-reactive protein test was very good, but sed rate very low. (can't remember exactly.)

morning body temp about 95.5

I wonder every once in a while why my LLMD hasn't addressed this. We did talk about the fact I can't take heparin due to a genetic test and can't take nattokinase, since soy makes me ache.

But I've never been told to take anything for it.

Anyone know what Rechtsregulat is made from?

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aiden424
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Well I don't want to be negative but I've been on heparin for a year and a half and haven't noticed any improvements. I've been on antibiotics for over two years with only slight improvements.

I do feel some better since starting treatment, but far from recovered. I was really sick for 19 years years before I started treatment, so I think it's just going to take a little longer to reach recovery.

Kathy

--------------------
You never know how strong you are until being strong is the only choice you have.

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merrygirl
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My CRP has been extremely high for a year now. They keep telling me it is inflammation. It is usually 4 times the normal. I will have to ask about this.


thanks, Melissa

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Anneke
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Before everyone rushes out to pay a zillion bucks on nattokinase, lumbo. and rechtsregalat - GO SEE A HEMATOLOGIST. These are the docs who are experts on coagulations disorders. They know which tests to run - and there are a whole battery of them - some genetic disorders and some acquired and some due to chronic inflammation caused by chronic infection. These guys are the experts - not someone you read on Lymenet.

There are no REAL STUDIES on Rechts. Messing with an unknown substance with no professional testing is dangerous - especially if it increases the likelihood of bleeding too much or bleeding internally.

Re: Haley and Bob Jones' cavitat - these guys have been successfully sued. You can read all about it on an internet search. despite what you read here, extracting nonsymptomatic root canals can lead to a whole new bag of problems. Any surgery in the bone, especially when it exposes bone in the oral cavity can be dangerous and lead to a bone infection - which believe me, is hell. And, getting them extracted, especially by a maverick dentist using a cavitat as a diagnostic can actually cause bone death as well.

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Anneke
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As always Marnie - Thanks for posting the research!! It was helpful for me to be reminded again about the importance of magnesium!

Take care

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aiden424
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When I was on warfarin it was vitamin E that I had the most problems with. I take a ton of magnesium and other supplements but it was vitamin E and ginko that messed up my pro times on warfarin. My blood would get way to thin.

Kathy

--------------------
You never know how strong you are until being strong is the only choice you have.

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Jellybelly
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Morning Annek, very soon after I was found to have hypercoagulation as it occurs with chronic infection I actually did go se a HEMATOLOGIST. What a waste of money that was!!! Very respected in the community I live in too.

Now keep in mind that I had blanch white skin, with a purple lace like pattern. My extremeties were ice cold and I do mean ICE, along with my nose and butt 24/7. They never, ever warmed up. My feet would often turn black on my soles when sitting.

To top it off, my blood was brown, and very thick and gooey. I regularly clogged needles within seconds when having blood drawn. That was on top of all the other typical Lyme symptoms and I had most of them, except for testicular pain, that may have something to do with me being a woman.

My highly educated and respected HEMATOLOGIST told me I was perfectly healthy and there was nothing wrong with my blood. She told me, the doctor that told me I had hypercoagulation was a quack.

Fast forward.....I stayed with my quack and I am in remission!!!! An LLMD can run all of the same tests that a HEMATOLOGIST can. Mine did. Mine first ran a PTT which showed my blood to be on the thick side, he used the word viscous like cold auto oil.

Then he ran the ISAC panel which was very new and something the very educated HEMATOLOGIST never even heard of. I came back extremely positive for hypercoagulation as it occurs in chronic infection. Keep in mind this is not the same at all as what happens when a person gets a blood clot.

My Doc also tested me for all of the clotting disorders, I was found to have none, Factor V Liden had been suspected.

There is a ton of research on this form of hypercoagulation now. If your LLMD can do all of the same tests that a HEMATOLOGIST can do why waste your money on that UNLESS your LLMD finds that you do in fact have some disorder that is out of his league and has nothing to do with Lyme, then by all means you may want to see a HEMATOLOGIT:}

Posts: 1251 | From california | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
   

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