posted
This is my first real attempt to research Lyme. When I initially went to PCP over a year ago, he ran the basic test and it was negative. It was never really looked at again. I've been sick for almost three years, although I suspect it has been longer and I just didn't connect the dots. Sx are MAJOR fatigue, buzzing/tingling in all extremities, twitches/tremors, cognitive issues (I swear I am losing IQ pts daily !), pain/stiffness in my joints, eye pain, heart irregularites, chest pain and breathing problems. These sx come for several weeks and then fade, although never leaving me back to normal. They usually return about two months later.
I've been to my PCP, neuros, cardios, Mayo (FL) and a neuro at Emory. All experts say they either don't know or there is nothing wrong with me. One doc told me I was just "hypervigilant" and my own mother has said I am looking to be sick.
PCP still feels there is something very wrong but he is at a loss. I printed off a bunch of Lyme info for him and he is reviewing it. He also ran another Lyme test. He is willing to work with me and any LLMD to fix this, should it be Lyme. He put me on 400mg Doxy for 2 wks, just to see if it helped. He thinks this could be it but he needs to research more.
Question is...what tests do I need to do? The more I read, the more confused I get. There are so many strains and other tick-borne illnesses. Is there a LLMD or someplace that can consult with my PCP ?
I have got to figure this out soon! If it isn't Lyme, than I want to rule it out conclusively. If it is, I want to start treatment NOW !
THanks for reading this ! Lisa
Posts: 41 | From SC | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Lisa,
Welcome.
I am glad to see that you have posted in "seeking a doctor" and you have had a reply.
Tests are not the only thing to go by. This is a clinical diagnosis - meaning by symptom, history, etc. and with tests to help.
Most lyme tests are not done correctly. They usually do the wrong test (ELISA is worthless) and they don't test all the "bands" of a Western Blot. They don't know how to interpret the IgG & the IgM - each should be done with Western Blot for lyme AND for other tick-borne disease (TBD).
Your situation echoes that of many here. And, yes, your symptoms do sound like they may be lyme-related.
It is excellent that your doctor is willing to work with you. However, if this becomes too complex, he may well change his mind.
He may also get pressure from the medical community, so just be aware of that. If neither of you two are very vocal, this may be able to fly "under the radar" to the benefit of both of you.
If your doctor is willing to read some articles - and even inquire about ILADS training - that would be great. However, I hope you can be assessed by an LLMD (that term will be clarified in my next post) as you need someone who is already experienced.
Still, we all do the best we can with what we have. I so hope your GP sticks with you. I hope we can make it easy for him to do that.
The articles I'll post are not to scare you - always read with the idea that there is a solution. But you have to know the nature of the infections and really understand how they work to move ahead.
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No offense, but I hope you hare not living with your mother. You need people around you who do not judge and who want facts.
At this point, I'd close down and be very vague about what you are dealing with UNLESS you have one or two close friends who will read the same articles and books you will be reading.
Otherwise, you can waste so much time trying to defend yourself and "earn" love and respect that should be unconditional. You have work to do and don't have time for anything less.
You can still be friendly and cordial to others - and it may be best NOT to go into detail until you are more settled with a diagnosis and a plan. Don't give others the chance to dismiss this. It's easier to simply not include them for now.
All that said, you might get the DVD film listed below. Watch it alone first, then select a few friends or family members to either loan it to or watch with them.
--
I will post a lot of stuff in - and others will come along, too, for more specific advice.
Best of luck to you. This is very complex and clearly up to the level of grad school course work all tossed at you at once.
Take care, now. You have a future to look forward to - even if this is a bump in the road or a major detour.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - (author 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.
==========================
Sadly, shows the state of treatment (and the new committee they have recently formed is not a very positive sign):
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:
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.
ILADS offers education for doctors, too.
Be sure to also see the section "Articles and Presentations"
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
At the menu on the left of their home page, you can link to DVDs of past ILADS seminars to purchase. This really helps in understanding the task at hand.
In addition to the usual coinfections from ticks, there are some other chronic stealth (hidden, sneaky) infections that most excellent LLMD know about:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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One more note and I promise I'm done.
Have you been on any steroids (prednisone, etc.?) If you are now, don't stop cold turkey and best with a LLMD's advice but steroids in a lyme patient can make it much worse.
Are you currently using artificial sweeteners? Aspartame/Nutrasweet/Equal can cause some serious neurological symptoms in some people. It is a brain toxin.
MSG, too, can be too excitatory and even toxic for the nerves. It has many names, so check the labels on any processed foods you consume and google names that are not apparent.
And exposure to MOLD can also trigger neurological symptoms.
And, if you have gas heat or use a gas stove, flush your home with fresh air each day. If you use a gas stove, turn on the exhaust fan BEFORE you turn on the burner and again right before you turn it off.
Also going unscented can help take the load off your liver and nerves. There are many natural products such as Seventh Generation and BioKleen on the market.
Get good rest but also gentle exercise (non-aerobic) as your body is able to handle without "payback".
More suggestions for self-care and diet are in the Singleton book.
posted
Thanks for the links, Keebler! I'll print them out for my PCP. His comment at my appt last week was that we will need to look outside the box to solve this. He is not a typical medical estblisment guy and has recommended some homeopathic things. The problem will likely be getting the testing done and the treatment approved by insurance.
I've heard good and bad about the LLMD in my state. I would prefer to stick with my PCP and have him research and consult with others. If it gets beyond him, he will say so. Have others ever tried this ? Or, gone to an LLMD and then worked thru their PCP for the treatment ? I think we could work the insurance better that way. We can't afford it unless insurance picks up at least part of this.
As for my mom...no, I don't live with her. She's just the way she is and the 700-mile buffer allows me to deal with it. I actually live with my DH and five children. My DH has been supportive and super-helpful but there is a limit to how much he can do. This whole thing really upsets me because of the kids -- I used to do all kinds of things with them and we had a blast ! I just feel like I am losing so much time.
You mentioned not to let the articles scare me. They don't, honestly. What scares me is knowing there is something very wrong, knowing it is getting progressively worse each time and no one is able to tell me what it is. I keep hoping that if I can just put a name to it, I can DO something about it. The not knowing scares me.
Lisa
Posts: 41 | From SC | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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One more thought: do you have a bed that inflates by the number?
If so, DO NOT go and just unzip it. You'd need advice first.
There is one on the market that has major mold problems. I can't find my file link to that right now but could hunt it down.
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Sounds like your PCP will work for you now, considering your comments above. Yes, there are some who work through the occasional wonderful PCP.
And, homeopathics can be helpful for some symptoms. Your doctor may be pleased with the research in the Buhner and Zhang books. Both of them incorporate abx at times, though, just as some LLMDS incorporate supplements.
such as allicin, andrographis, coptis, artemisinin, smilax . . . and on magnesium, fish oil, too. Search "hypomagnesia"
Low magnesium can create many of the symptoms you describe and many lyme patients have low magnesium. And magnesium supplements or IV or shots can help ease many neurological symptoms.
Of course, if lyme or other infections are players, they must still be addressed.
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As for support, now. Can you call your nearest lyme support group and see if they have any volunteers? Would your local United Way have suggestions for finding some in-home/child volunteers to help ease the demands?
If you ask within your established groups, you don't need to be specific as to why. You can just say "health concerns" or "overwhelmed" - sometimes you might need to schedule help just so you can close your door and rest for an hour or two. That is a job in and of itself.
Well, do take care. Hugs to you.
Tricia
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[ 02-01-2009, 02:16 PM: Message edited by: Keebler ]
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