I made horrible mistake and went to an internist hoping my blood work would indicate something that could be treated and help my recovery. I knew I was in big trouble when he announced, "lyme disease huh, well you didn't get that in Montana!"
I responded, "I guess I'll have to bring you up to date. . . ." I explained how 9 years ago the state collected 345 ticks that had bitten people and 6 of those people developed the EM rash that is conclusive of lyme disease. He said, "well we just don't see it. It is very rare. Most people who have it got it elsewhere".
I told him, as the CDC says only 50% of people who contract the disease get the rash, the statistics would confirm 12 of the 345 people bitten by ticks contracted lyme. That means one out every 30 people bitten by a wood tick in this state contracts lyme disease. That is hardly what you would call rare.
He said again, "Well, we just don't see it". I said, "Exactly. You do not believe it is here so you don't see it." I told him he could call the state epidemiologist to confirm what I am saying.
Most of what I said he came around to. He said, "well, finally it is here". I talked about other things, people he could contact for more information. I told him it was more than one infection; how I tested CDC positive for three infections. He seemed shocked by all of this and very uncomfortable as though I was trying to draw him into a trap.
I assured him that I knew he did not know how to treat lyme and did not expect him to. I just wanted him to look at my blood work to see if there was anything that might have been pre-existing that could be treated to help my recovery.
Instead of look at my blood work he asked what I was talking about. I said, wouldn it make sense that the hypercoagulation, that could be related to my MTHRF mutation, is reducing blood flow so medications cannot penetrate deeply into the tissues? It is known to cause fatigue and cognitive impairment. It reduces oxygen. Would it help me to thin my blood?
He said, "very interesting theory but I am not giving you a blood thinner. It is too dangerous. Other things cause hypercoagulation other than this mutation which I have never heard of. It is very common in chronic infections."
We went over other things too and each one was not worth his attention. The long and short of it is, my blood work shows long standing chronic infections. However the infection, chronic lyme, does not exist. He was not going to treat me for anything, period.
I left feeling like I had been punched in the face. I was never angry or aggressive with him. I was just explaining things.
All of us must have this blood work that indicates chronic infections. What is the infection? Why are we being diagnosed with everything else under the sun other than an infection? This is really scary.
Here is mine - what any doctor should know: High thrombosis antithrombosis =hypercoagulation=infection
High Ferritin = body is storing iron to hide from pathogens Low platelet count = indicates viral or bacterial infection High IgG3 = specific antibody to blood parasites
Only an LLMD would get these Very high C4a = muscular skeletal lyme Low CD57 = low killer cells specific to lyme
Why doesn't this prove we are infected?
Posted by poppy (Member # 5355) on :
You are looking for oranges on an apple tree.
It turns out that, contrary to what people expect, you can't just go to any doctor and expect competence. Or persistence in looking for causes. They want easy diagnosis and fix. And with too many of them, if it isn't easy, they start blaming the victim.
Posted by dal123 (Member # 6313) on :
High Ferritin can indicate other processes, inflammation, etc. Check liver enzymes. How high is the Ferritin? What is the serum Iron? If the serum iron and Ferritin are both high, your dietary iron can be spilling over & goes into storage @ liver, hence high Ferritin, OR if your serum iron is normal & ferritin elevated a real iron storage disorder can be the culprit, not necessarily Hemachromatosis, but a variant. Doing therapeutic Phlebotomy & IP 6 powder on empty stomach can reduce excess ferritin stores & reduce stress on liver. Give this a shot.
Posted by nefferdun (Member # 20157) on :
You are right poppy. What was I thinking? Next stop is 2500 miles away.
dal123, thanks for that information. He said I would have to have liver damage to consider hemachromatosis (even though my brother has it). I do not eat red meat - mostly vegetarian. No fortified food or vitamins. My ferritin was 350 (normal 0- 150). My iron saturation was a little high. The test results are not with me right now but my serum iron was normal.
I was told two years ago that the ferritin was way too high and I could have a genetic mutation. I dismissed that idea because she said the test was expensive and I couldn't afford it.
This doctor said I could donate blood to the red cross. I said, not with blood parasites, and he said, oh, yeah.
I will research IP 6 powder. I can't do therapeutic phlebotomy if no one will give me a script for it unless I can pay the red cross to just dump it. I was hoping he might suggest this but all he wanted to do was get me out of the office.
Posted by nefferdun (Member # 20157) on :
Thanks again dal123. I just ordered the IP 6. This board is literally a life saver. I also got lactoferrin because that is supposed to help
Here is what I found out online about it.
Phytic acid (IP6), derived as an extract from rice bran, is the most potent natural iron chelator and has strong antibiotic and antioxidant action. [Free Radical Biology Medicine, Volume 8, 1990; Journal Biological Chemistry, August 25, 1987]
IP6 has been found to have similar | iron-chelating properties as desferrioxamine, a drug commonly used to kill germs, tumor cells or to remove undesirable minerals from the body. [Biochemistry Journal, September 15, 1993] IP6 rice bran
extract (2000-4000 mg) should be taken in between meals with filtered or bottled water only (no juice).[/shadow]
Posted by 'Kete-tracker (Member # 17189) on :
"you didn't get [Lyme disease] in Montana."
"we just don't see it. It is very rare. Most people who have it got it elsewhere"
"Well, finally [Lyme] is here."
and the Big one: "Other things cause hypercoagulation other than this mutation which I have never heard of."
Need I say anything? Posted by randibear (Member # 11290) on :
I have been through 15 doctors and all told me the same thing -- lyme does not exist. I only found one good one but lost him. Never mention Lyme or try to educate a doctor. It jus ain't gonna happen
Posted by LaurenMiddleTN (Member # 35174) on :
Hi All Here's a thought... Lyme may or may not be in Montana. (My family has a cabin there and we summer in MT) ... here comes the thought. We, all of my family, travel.
I too contracted Lyme in a state - TN, where we just don't see it according to the doctors. Here's the thing. I pulled the tick, had the EM rash in that spot 36hours later and are continually being treated for Lyme.
I saw another doctor this week, when my primary MD had enough and referred me to a specialist. This one mentioned IV antibiotics as my 4th round of orals hasn't seemed to kill the "easy" bacteria.
She too said we don't have Lyme here in TN. So that's probably not it. I explained however that I worked for a company that required a lot of traveling... she perked up and asked where.
I explained how over the last 6 years I spent 3 months in CT, and Maryland. Took several trips to FL (driving not flying) and spend vacations traveling up to PA and NY.
So I guess my thinking is... don't these doctors believe we travel? Posted by Carol in PA (Member # 5338) on :
Have you looked into systemic enzymes to reduce the hypercoagulation? This has helped me tremendously.
Some LLMD's will put their patients on them along with antibiotics, as they help the antibiotics to work better.
[ 03-11-2012, 12:28 AM: Message edited by: Carol in PA ]
Posted by nefferdun (Member # 20157) on :
I agree I was really stupid but I just couldn't help myself. If I was smart I would have told him I was there for chronic fatigue.
Carol, that is a great link for hypercoagulation. I book marked it. I can't bring up the systemic enzymes right now - internet is too slow. I did order Boluoke though and lumbroinase.
Posted by nefferdun (Member # 20157) on :
you're links did not come up (failed page) but I did a search which was very useful. I have already ordered lumbrokinase and boluoke which are what you are talking about. I got directions on how to take them.
I was just going to pop them in the now enormous pill containers and take with with all the rest of the "stuff".
This is far more complicated than I ever realized. I also go directions for taking the DMSA and IP 6.
I am going to have to make a schedule to follow.
My mind is deeply affected by this. I can't remember anything. Sometimes (in fact often) I don't know if I just did something when I just did it. Very scary. I went outside and was looking around wondering, where is the dog?
Did I bring him out with me? I always do but where is he? Did he run to the neighbors? I found him inside very disturbed that I evidently closed the door in his face when I walked out.
This makes me very anxious because I have to repeat over and over so what is really important does not just fall through the cracks into oblivion.
Posted by Carol in PA (Member # 5338) on :
I have a 5x7" notebook that I use to keep a running list of my meds. Whenever I take something, I write down the time and the med.
If I take two or more of something, I make a small "2" after the name, like when you write "5 squared".
Most days my mind is like a sieve, and this way I can space out pain meds, etc.
Posted by sparkle7 (Member # 10397) on :
re: here comes the thought. We, all of my family, travel.
---
How about the ticks? I guess they don't hitch a ride in a car, plane or bird or on a dog of someone who travels, either...???
God forbid someone should mention that mosquitoes, flies or fleas may be vectors of the co-infections... or even "possibly" Lyme, itself (even though I think the tick saliva has a part in all of this transmission - I wouldn't rule out other vectors completely).
Common sense anyone? This charade is wearing thin.
Posted by Cold Feet (Member # 9882) on :
"God forbid someone should mention that mosquitoes, flies or fleas may be vectors of the co-infections... or even "possibly" Lyme, itself (even though I think the tick saliva has a part in all of this transmission - I wouldn't rule out other vectors completely)." ________________________
This is all proven science. So sorry that doctors are not paying attention to it for obvious reasons.
Is PubMed or scientific meetings enough for them? This knowledge has been circulated for many years. See my previous posts, but many others have posted about these studies.
Their ignorance is costing you suffering, it's that simple.
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Need I say anything? ![[Cool]](cool.gif)
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