Let me apologize for the length of this from the start. To give a little history, I was diagnosed with Lyme back in 1992 while in the Navy in Newport Rhode Island. I believe, looking back, that I actually had it for about 2 years prior to being diagnosed. The Navy and Civilian doctors that I had seen prior to that just didn't put the pieces together. It all started in 1990 while my ship was in dry-dock in Boston Ma. The ship sponsored a day trip to play paint ball in Lebanon ME. With in a few days, I started getting pain in my jaw. The Corpsman on the ship sent me to the dentist. Shortly after that, the headaches came. They were massive and lasted for up to 24 hours. I was taken to St Elizabeth's Hospital in Boston numerous times, where I was given all types of tests. MRI, CAT scan, Spinal Tap, ECT and no one could figure out why I was having these headaches. I ended up with Bells Palsy on the left side of my face. My left eye is droopy to this day. This went on for months. They wondered if I was allergic to something in the shipyard, or the ship. My headaches eventually stopped coming and the Neurology Dept in St Elizabeth's diagnosed me with Cluster Head Aches. Now fast forward a few years. My ship is now home ported in Newport RI. I start getting rashes all over my body. They were mostly on my legs, but did have some on my chest and stomach. I was being seen by the Dermatology dept at the Naval Hospital in Newport. They kept taking biopsies and could not figure out what it was. The rashes would move around, but never actually went away. I was seeing my Dr. one day, and he took me to a more senior Dr, A Commander and asked him to look at my rashes to get his opinion. He looked at me for a minute or two and asked if I had been checked for Lyme. They had me go give blood and I found out a day or two later that I was positive for the Lyme teeter. I had never heard of Lyme at that time. My ship was getting underway, so they opted to have me take pills over the intravenously administered drugs. I was deemed cured after the regime of pills. I always wondered how they actually know that I was cured, but I was cured none the less. All my symptoms went away anyhow. Now lets fast forward again to 1996 or 1997. My rashes came back. I was now stationed in sunny California. I went to Medical and told the Dr that I saw that the last time I had a rash like this; I was diagnosed with Lyme disease. I was told, ``We don't have Lyme Disease in California'' and he gave me a cream to put on it and that was that. A year or so later, we transferred back to the east coast to Virginia Beach Va. I still had my rash on my legs. I had to get a physical while there and the Dr asked me about my Rash. I told her the same story I told the guy in California. She had my blood drawn and told me that she could see that I had Lyme in the past, but it was not active. She sent me to Dermatology at the Portsmouth Naval Hospital where I stayed a patient up until I retired. I would go in and they would take a biopsy. It would come back with no real results, so they would tell me it was eczema. The rash went away about a year before I retired in 2007. I was rash free for about two years, but they are back. I now have two large, red rashes, one on each shin. Over the last year, my new civilian Dr has been trying to figure out why my liver enzymes are elevated. I am on cholesterol meds and at first she thought it was due to that. She had me stop my meds, but my enzymes actually went up even higher. She put me back on my meds. I have had two ultra sounds of my liver that showed some fatty tissue, but otherwise normal. She called me yesterday and told me that I now need a biopsy of my liver. I am scheduled for that next Thursday, the 14th of May. I guess my real questions is this? Could this still be tied back to when I had Lyme in 1992? Did they maybe not kill it when they gave me those pills back then? Thanks for listening. Rob
Posted by Keebler (Member # 12673) on :
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Pedy6pack,
Welcome (but sorry you have had to come here) You must have fabulous eye sight and zero vertigo! However, since many here have trouble reading and various types of vertigo, so that you can get more replies, I've broken up the text in your original post and I'm sure you will have some good replies soon.
---------
Good Morning,
Let me apologize for the length of this from the start.
To give a little history, I was diagnosed with Lyme back in 1992 while in the Navy in Newport Rhode Island. I believe, looking back, that I actually had it for about 2 years prior to being diagnosed. The Navy and Civilian doctors that I had seen prior to that just didn't put the pieces together.
It all started in 1990 while my ship was in dry-dock in Boston Ma. The ship sponsored a day trip to play paint ball in Lebanon ME. With in a few days, I started getting pain in my jaw.
The Corpsman on the ship sent me to the dentist. Shortly after that, the headaches came. They were massive and lasted for up to 24 hours. I was taken to St Elizabeth's Hospital in Boston numerous times, where I was given all types of tests.
MRI, CAT scan, Spinal Tap, ECT and no one could figure out why I was having these headaches.
I ended up with Bells Palsy on the left side of my face.
My left eye is droopy to this day.
This went on for months. They wondered if I was allergic to something in the shipyard, or the ship. My headaches eventually stopped coming and the Neurology Dept in St Elizabeth's diagnosed me with Cluster Head Aches.
Now fast forward a few years. My ship is now home ported in Newport RI.
I start getting rashes all over my body. They were mostly on my legs, but did have some on my chest and stomach. I was being seen by the Dermatology dept at the Naval Hospital in Newport. They kept taking biopsies and could not figure out what it was.
The rashes would move around, but never actually went away. I was seeing my Dr. one day, and he took me to a more senior Dr, A Commander and asked him to look at my rashes to get his opinion. He looked at me for a minute or two and asked if I had been checked for Lyme.
They had me go give blood and I found out a day or two later that I was positive for the Lyme teeter. I had never heard of Lyme at that time.
My ship was getting underway, so they opted to have me take pills over the intravenously administered drugs. I was deemed cured after the regime of pills. I always wondered how they actually know that I was cured, but I was cured none the less.
All my symptoms went away anyhow. Now lets fast forward again to 1996 or 1997. My rashes came back.
I was now stationed in sunny California. I went to Medical and told the Dr that I saw that the last time I had a rash like this; I was diagnosed with Lyme disease. I was told, ``We don't have Lyme Disease in California'' and he gave me a cream to put on it and that was that.
A year or so later, we transferred back to the east coast to Virginia Beach Va. I still had my rash on my legs. I had to get a physical while there and the Dr asked me about my Rash. I told her the same story I told the guy in California.
She had my blood drawn and told me that she could see that I had Lyme in the past, but it was not active.
She sent me to Dermatology at the Portsmouth Naval Hospital where I stayed a patient up until I retired. I would go in and they would take a biopsy. It would come back with no real results, so they would tell me it was eczema. The rash went away about a year before I retired in 2007.
I was rash free for about two years, but they are back. I now have two large, red rashes, one on each shin.
Over the last year, my new civilian Dr has been trying to figure out why my liver enzymes are elevated. I am on cholesterol meds and at first she thought it was due to that. She had me stop my meds, but my enzymes actually went up even higher. She put me back on my meds.
I have had two ultra sounds of my liver that showed some fatty tissue, but otherwise normal. She called me yesterday and told me that I now need a biopsy of my liver. I am scheduled for that next Thursday, the 14th of May.
I guess my real questions is this? Could this still be tied back to when I had Lyme in 1992? Did they maybe not kill it when they gave me those pills back then?
Thanks for listening.
Rob
(First post from Hampton Roads, VA)
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Posted by Keebler (Member # 12673) on :
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Rob,
I can't address all of this right now but many things can cause "fatty liver disease" and, yes, lyme is among those. However, it would be hard to say.
Can you describe the rashes? (And, while lyme may or may not be connected to rashes, did you ever figure out if you were allergic to something?)
Since you are having a liver biopsy, I suggest waiting a little while on that until you can see a LLMD (lyme literate MD) and then, when the biopsy is performed, you may be able to get some of that tissue tested for lyme and other tick-borne infections.
The tissue would have to go to a special lab.
So, you are now a civilian. Do you get medical treatment through the VA ? Can you manage to go out of system to a private doctor as most LLMDs do not take insurance.
As to if you have lyme now, since you did and only got a short treatment, you had rashes, bells palsy, etc. you really need to be assessed by an expert.
With fatty liver disease treatment with antibiotics may be difficult but a good LLMD (and good liver support) can help. If lyme is involved, treatment is essential.
There are also other things you can do to help your liver but most regular MDs are unaware of that. I assume that you don't smoke or drink at this point (if you ever did) as those are two things that hurt the liver.
Have you ever taken any liver support supplements such as Milk Thistle, NAC or ALA? If so, have you continued on some of those?
The Singleton book, linked below, has good suggestions for helping the liver, especially during treatment. And, if a LLMD confirms that lyme is connected, there may be other ways to treat such as with a rife machine if meds might be too much for your liver.
I have to stop now ( and will post a bunch of links) and others can take the questions from here.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.
(Rob, Clognen has tested some tissue samples. You'll have to google for their contact info. but it may be well worth talking to them BEFORE you biopsy. Also talk to Igenex.)
========================
VERY important to read - even BEFORE testing:
Dr C's Western Blot explanation is discussed here:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
RIFE machine - with lyme and TBD (tick-borne disease).
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Posted by bettyg (Member # 6147) on :
rob, welcome!! so sorry you are joining us here
YES, YES, YES!!
yes it's lyme; yes, you were UNDERTREATED and now how chronic lyme, and i can't remember your last question.
check your profile, i'm sending you VIRGINIA llmds you need to go to any on the list i'm sending you vs. INFECTIOUS DRS. .... not good; they undertreat and they don't believe in chronic lyme!!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" .
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. =========== i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! look on LEFT side :legal resources" !! all WINNERS!
Posted by MorningSong (Member # 19989) on :
Rob~ I live in Virginia as well. I will Private Message you the name of an excellent Lyme Doctor in Virginia that may be able to help.
Posted by sparkle7 (Member # 10397) on :
re: I was told, ``We don't have Lyme Disease in California''
This one always gets me... As if people don't travel or go on vacations. Especially, since you are in the Navy!
Everyone has given you a ton of info. Some people do find help by going the "natural" route. If you are inclined towards that there are a number of good protocols for detoxing or "flushing" your liver, naturally.
Google "Hulda Clark" or "Dr. Schulze" & "liver flush" for some ideas.
Good luck!
Posted by Jill E. (Member # 9121) on :
Rob,
Take photos of your rashes, whenever you get a rash. It will help your Lyme-literate doctor (when you finally see one) determine whether it is a Lyme rash, or a rash that can happen with the many co-infections (other tick-borne diseases) that the insect bite can transmit.
I say insect bite because these diseases can be transmitted by more than ticks.
Here is sunny San Diego, where I was bitten, I got five diseases from the tick bite. My father was bitten by a mosquito and got Lyme and Bartonella. Another person I know here got Lyme, Tularemia and Babesia from a biting fly.
There is Lyme throughout all 50 states, including California. We have a CaliforniaLyme group on Yahoo, which has a map on the homepage showing areas with documented Lyme Disease. I am a volunteer with the California Lyme Disease Association, and yes, I ran into plenty of doctors who said there is no Lyme Disease here, that's why my diagnosis was so delayed.
I went through a liver biopsy and it's not bad. It wasn't for fatty liver, it was for liver damage from an antibiotic.
Please keep us posted as to when you are able to see a knowledgeable Lyme expert.
Jill
Posted by Keebler (Member # 12673) on :
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See the section below about NAC (N-Acetyl-Cysteine) - it can help protect the liver from damage from abx. (Other liver protection addressed by Singleton and also by Burranscano in links above.)
--------------------
Here is a a set of links I've collected over time. There may be some helpful information here:
. . . Individual variations in our cytochrome P40 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs. . . .
The important thing to remember is that the liver is a hot (metabolically active) organ, and so tends to get congested and inflamed.
. . .
Protection
Turmeric root, wheat sprouts, schisandra berries, amla fruit, beet root and milk thistle seed are among the major sources of protective anti-oxidants for the liver cells, as are fruits that contain flavonoids, especially citrus fruits.
These should be used to prevent development of inflammatory disease, or for damage protection as in the case of persons taking strong chemical drugs or undergoing chemotherapy.
Deficiency
The liver can become weakened and deficient. If this is not corrected, it can lead to liver atrophy and depletion of glycogen stores, even hepatitis. Signs include fatigue, low blood pressure, hypoglycemia, dry eyes, headache, heat symptoms and irritability . . . .
Heat and Inflammation
To remove excess liver inflammation with heat signs or toxins . . . .
. . .
Pain
If there is liver inflammation with signs of pain and tension, use herbs that calm the liver and move the blood . . . .
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
In addition to information Terry has posted there, she says:
There is a page on lymeinfo.net about methylation but it just covers the theory behind the simplified protocol and not really methylation cycle issues in general.
![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.