posted
HI, I am pretty sure have late stage Lyme leaning towards ALS. I just got first time Infusion for 2 mo.
Wonder if just stirred up things/not to mention ridiculous cost.I am having more symptoms able to focus(worse)pain worse++++added symptoms??
Am I on countdown, if I am will go & do some things always wanted to not worry about market loss many of us took.
What TO DO for us in Late stage. Hugggss TO ALL IN NEED!!!!!
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You might want to learn about Dr Martz's recovery from "ALS" that had been misdiagnosed. When he was treated for the tick-borne infections, he recovered:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: "I just got first time Infusion for 2 mo."
What was the infusion?
Was it regularly for 2 months (if so, how often) or one infusion 2 months ago?
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You say you "think you have late stage lyme" and with over 400 posts, I assume you've covered all the research . . . are working with a good doctor - but are you getting some sort of treatment for "ALS" that a LLMD should know about?
Are you being treated for lyme? By an ILADS-educated LLMD?
Be sure to read all of that article above. That guy - and many more who had been misdiagnosed with "MS" or "ALS" or "Parkinson's" have gotten better if lyme or other TBD were at the root of it.
posted
If you are late stage, two months is not enough treatment. I was late stage as well, and required over two years of treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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adamm
Unregistered
posted
Staging is bogus when it comes to Lyme. You need extended, high-dose treatment even if you start while the tick's still on you, and you can get any symptom at any time. I got encephalitis two weeks after my bite.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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:
"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:
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Late stage lyme needs more than two months of treatment! Chances are good that you can get better with extended and proper treatment by a lyme literate doc. Keep treating!
Posts: 2557 | From home | Registered: Aug 2006
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jt345
Unregistered
posted
Hi
The book on chroic-late lyme as yet too be writen. Do not give up,I repeat do not give up.
After awhile You will relize that all You really have is Yourself. You are resonsable for Your health. Yiu have too take control. If You don't You will end up like Me.
Broke,and stuck on orals .force Yourself on doctors too take You for real. Do not take no for an answer.
posted
Hi, Thanks for all info & time you spent. Soo sweet. Yes, I have been researching Lyme for 15 yrs. all co-infection as FM/Cfides>MS/RA/some ALS/Parkinson's++++ We have long way to go to know what other neurotransmitters are infected. Doc. on TV doing new treatment for Parkinson's Pt. Asked why works he said no idea why, just does. Admitted we prob. have 100 neurotransmitters they know nothing about/ beyond serotonin & few others, they treat now.
I Have won 2 scholarships for work from LAP., also voted into Cambridge's Who Is WHO for my work.
I have battled for this only 2mo. treatments for 20 yrs. I am out cash to go outside my Ins. I have thought going to Mexico because they are treating for lot less. This DR. is basically AIDS/I.D. Doc. We do not agree. Only reason got treatment, was because I pushed & man on this net went with me.
I was terribly ill at end & after was not on. SO may been herx.
After 20 yr. basically no income. Live on 400.00 mo. Do not even run A/C in FL. My maint. fee takes up entire income almost. Lived off dividends which we all know what happened there.
I tried to push for more & he said we do not agree on treatment besides the Rocephin which cost me over 10,000. That is about it for me.
My latest tests were all neg. So he was not going to treat including clean PCR.
I brought Kaiser papers from 10 yrs. ago with all positive from Eliza to Western Blot & anti bodies, Plus 9 yr. ago had 3 bands pos. which that Dr. not treat not enough bands. That is when I really new had Lyme for sure everything added up.
I started after Trip staying St. Andrews park in FL. Came home with massive amt. bites, but thought all mosquito. Deer came up to daughter & I she ran high fever, when broke was fine. Not now though in 30`s. I went 10 days in hosp. with weird meningitis, 5 docs. scratching heads. Sure now that was Lyme, I was never well again with in mo. had emergency hysterectomy which is common. Gave up all my sports 1 by 1. Then my work & businesses sell. Everyone telling me was stress, from being stalked for 8 yrs.Sure that did not help but I knew had something seriously wrong.
Told MS/FM/Cfids+++ EBV many other Dxes as many of us have been through. I worked at clinic with Thousands Pts. came from all over, worked with Bowen day they found it mutating on own.
I am stuck these are only Dr. on my list can go through &believe me. That has been huge battle with Primary & many other Drs.
I know this last yr. I have went down hill big time. Need more help. Yet, they will not order.
Unless I go to Mexico. I am looking into.
Thank You all so much, I have felt so alone. Family still thinks it is not Lyme maybe FM now, but think I can just get better on own. My Sis is oncology nurse in Mich. huge Lyme area. Does Not get it & saw me with picc line know how put myself out there financially & physically that I am finally pushing to not have ALS.
Know have many of signs, going down way I have trying so hard to keep up. Just can`t.
Take care Know you are all suffering. Take CARE YOURSEVES, Thank YOU for your precious time. Hugggssss,To AlL IN NEED/Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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Hugggss TO ALL IN NEED!!!!!
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