posted
Hi, Could anyone tell me if you absolutely have to have the rash to have Lyme Disease? Thank you
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not at all. Very few patients actually see a rash and many don't even remember a tick-bite.
Do you have a good doctor, a REALLY good doctor? If you are wondering if you might have lyme, you should also be assessed for other tick-borne infections or TBD (tick-borne disease).
It is best if you have a doctor who is educated in the research from ILADS, one is a lyme literate MD (LLMD). Most doctors are not very well educated in the field of lyme/TBD.
--------------
The earlier you can get assessed and (if needed, treated), the better. Good luck.
There is a lot to sort through and I hope the links below will be a good reference source for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
This explains WHY you need an ILADS doctor (now, it would be fantastic if your doctor can work with you for backup and support but you need a real expert):
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. Please be sure to read the entire article.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
-=================
TESTING
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 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:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link.
=================
The testimony from the IDSA Lyme Guideline review panel, July 30, 2009 - Some ILADS doctors presented research in hopes of changing the IDSA guidelines.
posted
Thank you Keebler. The reason I ask is, I love to walk in the woods and watch for Eagles. About 3 weeks ago, that night I felt something on the back part of my knee. Why I didn't look to see what it was is beyond me. I kept scratching at it. Anyway, it was there the following day while I was working and I started picking at it, then looked and it was real small and dark colored, I then pulled it off and it started to bleed. I'm positive it was a small tick. So my next question is, do you bleed after pulling off a tick? It bled for awhile and was hard to stop. I'm mostly just curious, and trying to figure out why I'm feeling the way I have been lately. Thanks again!
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
posted
NOPE!! Many of us are chronic precisely for that reason. We didn't have the benefit of a rash.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- serenitylady55,
Many here have chronic neuro lyme and large blocks of type are just a swirl of grey. For that reason, it will help to break up future posts.
I'll do that with your one above so that I can read it and then, also, more eyes can read and reply:
----------------
serenitylady55 writes:
Thank you Keebler.
The reason I ask is, I love to walk in the woods and watch for Eagles.
About 3 weeks ago, that night I felt something on the back part of my knee. Why I didn't look to see what it was is beyond me. I kept scratching at it.
Anyway, it was there the following day while I was working and I started picking at it, then looked and it was real small and dark colored, I then pulled it off and it started to bleed. I'm positive it was a small tick.
So my next question is, do you bleed after pulling off a tick? It bled for awhile and was hard to stop. I'm mostly just curious, and trying to figure out why I'm feeling the way I have been lately.
Thanks again!
(serenitylady55) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- serenitylady55,
I am so sorry to hear this. Yes, if an embedded tick is pulled out, it will cause bleeding.
I assume you are not feeling well, by your saying " . . .trying to figure out why I'm feeling the way I have been lately. . . ."
Please find a LLMD, it can take a while to get in but tell them about the recent bite and they make be able to get you in sooner since you'd be an easier case and you need emergency assessment.
Might your regular doctor be one to help? Most don't know much about lyme but some do - you may need medicine right away and however your GP could help now, it could hold you over until seeing a LLMD.
It's good to give your GP a chance if you think s/he is capable. But, don't be surprised if this is dismissed. Do not dismiss it yourself, however.
You have an excellent chance of getting better with early and aggressive treatment. Hopefully, you will get at least a prescription for doxycycline. It may not make you feel better, in fact it could make you feel worse. If so, that is more likely that this would be lyme, then.
By doxy will not cover other tick infections.
And, if you start doxy, stay out of the sun and get some good "probiotics" and avoid sugars so that you won't get a systemic candida (yeast) infection.
If you can't get medicine right now . . . I'd get some olive leaf extract capsules and also some allicin (from garlic) capsules . . . to hold you over until you can get to the doctor, as soon as you can.
If you are feeling very poorly, go to urgent care now. Really. Some urgent care places are familiar with tick infections. In fact, if you could start tonight (I know it's 6 pm in your time zone) . . . it would be good to get doxy tonight if you could.
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, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
IP: Logged |
posted
I will look in that thread you posted Keebler, thank you again, and I'll look at the links you put in. Great info!
Lymetoo, I've been very achey, my back is literally killing me, my feet feel achey, my knees hurt. I've had a headache I can't seem to get rid of.
I also been getting dizzy spells. Not severe. I could be just sitting here, and get a dizzy spell now and then. I never had this stuff before.
I work from home, so I am not around people. I very seldom get sick or the flu either.
That tick was on pretty hard, because I kept poking at it all that night and the next morning. I finally looked behind my knee, and pulled it off. Then it bled for the longest time.
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
posted
First I have to find one of those Docs in my area..then if it turned out I did have it, I would have to go natural as I don't take medications.
I have much research to do, but I'll wait till I find a doc and get tested.
Reading over those studies and symptoms, there is a possibilty.
Thank you for the replies and info. It's much appreciated.
Peace!
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said that you "don't take medicines." I don't mean to pry as that may be for religious reasons or because they have not agreed with you in the past, perhaps hypersensitive.
However . . . if this is lyme, clearly aggressive treatment could save you from a life of pain and illness, paralysis or even death. Lyme can be fatal. And there are other tick infections that can go right to the brain.
However you approach this, I do not mean to scare you, but your very life if on the line here. I do hope you can consider the best medical care. If, for what ever reason, you don't take medicines, please consult then with an excellent LL ND (naturaopathic doctor) who is a member of ILADS.
Most of them also use antibiotics - and most of the patients who do a combination of both antibotics and supplements do better than those who do just one route . . . but a LL ND may be able to work you. This requires a full protocol, not just a few supplements. Some of the links above should be of help.
BTW, if you happen to be without a spleen, say from an accident or surgery, you MUST, MUST, MUST be checked for BABESIA, another tick-borne infection. It can be fatal for anyone who does not have a spleen.
Good luck with all of this. I hope you can start some sort of strong antimicrobial approach ASAP. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
"However . . . if this is lyme, clearly aggressive treatment could save you from a life of pain and illness, paralysis or even death. Lyme can be fatal. And there are other tick infections that can go right to the brain."
You will be sorry if you don't get aggressive with this right away. Natural won't cut it .. in my opinion.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Thank you for the input Keebler and Lymetoo...coming from a pharmacy career, i've learned all too well how docs push meds on patients that imo are unjust.
I've learned side affects of medications, what should be taken with what etc. I don't take meds because I know how dangerous medications are. The FDA pushes out medications with tons of side affects with no concern of the patients.
I will have to go naturally and have an excellent place to start. I get all my medications from lef.org ..
Thanks again!
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
posted
Something like only 40% of lyme infected tick bites produce the rash.
I pulled a tick off me in Nov '07, it tested positive for lyme. I never got the rash.
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Supplements have not been enough for me. (However, I've not been able to stay on a particular protocol and had to piece-meal.)
True, I was ill for many years before 3 TBD were dx 12 years ago. While I had the positive tests, no doctor would treat in the state where I live.
So, I relied on supplements. Then, we didn't know as much about that as we do now but still, were I to have had the luxury of prompt treatment, I would have done a combination approach under a LL doctor's wise plan.
But, with just this and that - here and there as I could afford - (and not complaining here, just stating what can happen) -- I'm still very ill - seizures from the slightest sounds, etc. I cannot even be around others due to the sensory overload and the need to lie down most of the time. I've not even been able to(successfully) go out in public for years without falls and seizures.
I can't listen to any music. I was not treated in time and have only had brief times when I could even approach this full force.
At first, after finally getting diagnoses with 3 TBD, I worked with a ND for 5 years - I though he knew about lyme but did not. He worked to get my body stronger so that I could find this on my owned. Big failure, that plan was.
With no LLMDs in my state, I've been able to consult in person with two LLMDs (and had to fly thousands of miles to do it).
Years later, saw a truly excellent LL ND twice but did not have funds for treatment. She wanted me on IV Rx for many months, she said the infection in the brain required that. Or - many oral abx that I did not think my body could handle.
Although a ND, she felt stronger medicine was required. I might have considered that if my funds would have covered it.
But, I went back to trying to figure it out on my own. I've done the best I can, with much study and have put more than a few pennies toward it.
I've tried some abx for a couple months or so - with supportive supplements - but my plan was not well-guided. And, with porphyria, I do have trouble with many pharmaceuticals. Many of the oral abx are not possible with my damaged ears (and, true, many abx affect the ears - so that is why the protective supplements are vital).
But the infection(s) can do much more damage than medicines (if the right support supplements are employed). Treating a new infection is FAR easier than trying to fix it later.
A very specific plan is required, whatever route you talk. I do hope you can see a LL doctor ASAP.
Please consider the very specific treatments that lyme and other TBD require. While lef.org does have a nice garlic capsule, that alone is not enough to treat lyme and they don't have anything to even touch babesia if you might that. Be sure to read the books, etc. and see what they say about artemisinin. But, it must be combined.
Mono (single) treatment is never enough for any tick infection. Combination and rotation matters greatly.
There are many LL ND (naturapathic doctors) who are well-educated in the various infections and what it takes to address them. Please consult with someone who is expert.
This is a particularly advantage window for you - as you were recently bitten. Even with pharmaceuticals, there are some things to mitigate the side-effects. Milk Thistle, for instance, can help protect the liver.
I don't want to harp on this but many of us here are in severe pain and dizziness, etc. That should have been prevented. You have a chance - just be sure to get expert diagnostics - and then learn all you can about whatever is going on with you.
If you do have lyme &/or other TBD, learn all about the infections and be very specific and thorough in treatment.
This is an incredibly complex situation. It takes a tremendous attention to detail. There are ways to be kinder to your body, just be sure the guidance comes from those who have done a lot of research on how the infections work and how the infection specifically disables the immune system. This is very intricate.
Be VERY careful with taking anything that is to boost the immune system. If lyme, one part of the immune system is suppressed (fooled) and another part is running on overdrive (looking, but not finding the spirochete as it's got a great system of hiding).
Immune support for lyme patients CANNOT be done in the same way as for a person who is not infected with lyme.
Pardon me for repeating so much. I forget what I type and can't really pay attention long enough to remember from one sentence to the next. And it's hard to read back over what I wirte due to eye spasms.
I just want to be sure that your life will be a good life. With lyme, "learn and live" can work if done in that order. But, the learning can take years - you you need an expert now.
Good luck. Good health. -
[ 10-06-2009, 01:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- After diagnosis, as part of a specific treatment plan, many find that rife machines can help. A book and bulletin board here explains more:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
. . .
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.
. . . more at link above.- -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Hi, wanted to add to this situation. From what I have been reading/researching , people can actually carry Lyme Disease for years and have minor symptoms throughout the years.
I only say that, because I remember pulling ticks off myself all the time. For years I've had unexplained head and hand tremors, have been dx with Mucha-Habermann (rare disease), which I don't think that is what the rash is that comes out sometimes. Basically my immune system takes a dive now and then.
So I have much research to do. I also learned Lyme has something to do with the T Cells, and so does Mucha Habermann.
Right now, my back upper back by my collar bone, my hands and feet hurt bad, feel very fluish.
Hope I can find a physician to check this out.
Take care!
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear of your situation. This new bite, though, may lead to a good resolution.
When you find a good LLMD, you might have them also assess for past RMSF (Rocky Mountain Spotted Fever) and Tularemia.
Rashes from those two tick-borne infections can look very much like the photos of rashes from the Mucha-Habermann sites. But also know that lyme and other TBD rashes can have a broad range of appearance. The "classic" bulls-eye is not the only lyme rash when one does appear.
Did you do corticosteroid therapy for the dx of Mucha-Habermann?
If so, the LLMD must be made aware of that - even before any testing takes place. S/he will need to know what you took, how long, how often. If diagnosed with any tick infections, previous steroid treatment needs to be considered as the doctor designs your treatment plan.
The doctor will also need to know if you took corticosteroids, did they help or not? And were you also on antibiotics at thte same time? Your reaction will give them good information.
And, for now, since that new tick bite, it is best to avoid steroids in all forms unless needed during a life-threatening situation. Steroids can make lyme - and other TBD - much harder to treat.
Again, the very best of luck. I hope you find good care very soon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
No I was never on any medications. They gave me antibiotics a long time ago, but it made me sick and never took anything else again.
They say there is no cure for that MH disease and don't know where it comes from. That's what bugs me the most that they can create a name for something and know nothing about it. Amazing.
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BTW, if antibiotics made you feel sicker that might have been the Herxheimer reaction. Often, for lyme patients, abx do make them feel worse rather than better. That takes a while. Just another clue for the next doctor you see.
I NEVER believe doctors who say there is no cure for anything and then just walk away. We just might not yet know what the cure - or solution - may be.
We may not yet have a cure for lyme but you will never see a good LLMD give up on a patient. You will never see them give up on finding answers and solutions. And many people have gotten much better and recaptured good health.
I certainly don't know enough about it, so, I am not saying that Mucha-Habermann (Pityriasis lichenoides or PL) might be tick-borne infection but it could have been a misdiagnosis. The rashes sure look strikingly similar to RMSF and to Tularemia.
Many people here have been misdiagnosed and then found to have lyme or other TBD.
I haven't look all around but this one abstract caught my eye. It implies that cause of Mucha-Habermann (Pityriasis lichenoides or PL) can be "infectious" and that systemic antibiotics are sometimes part of treatment. I don't see that anyone has explored that "infectious" connection, though.
Pityriasis lichenoides: pathophysiology, classification, and treatment.
Excerpts:
The pathogenic mechanism behind PL is unclear although infectious or drug-related hypersensitivity reactions versus premycotic lymphoproliferative disorder are the mainstay theories.
The foremost therapies for PLEVA and PLC are phototherapy, systemic antibacterials, and topical corticosteroids. . . . .
-----------
Of course, as mentioned in a post above, steroids can make tick-borne infections much worse. It may have been a good thing you were never on then. - Again, good luck.
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Hi again, yes I've used the sunlight for treatment. The Derm said it's the same as phototherapy. I really believe I was mis-dx. The doctors seems so uncaring about it and basically ignored my symptoms for years.
Thank you so much for your support. If feels good to talk to someone about this.
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
posted
Hi everyone....I've been making a lot of phone calls and have a very nice lady helping me find a doctor in my area.
I just left messages at our local Lyme Support to call me.
I am feeling very sick today. Very shaking, tremors are worse, have eye pain and nauseated. Just feel very weak and slurry in speech also.
Thanks for listening.
Posts: 10 | From Pa | Registered: Oct 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think you need emergency care, perhaps IV medicine.
Have you communicated all this with your GP?
If you do get seen right away and if they give you doxycycline, you will need to avoid sunlight on your skin, even through a window.
I hope you hear back soon from the local support group - but, really, I would not wait. I'd call my GP now - and if they offer no help go to a Urgent Care clinic as a walk-in (or if you think this warrants it, to the ER ) --- do you have someone else to drive you? Driving with the symptoms you are experiencing could be dangerous. If a friend can't take you, please call a taxi cab.
Remember that ticks carry all sorts of infection, both bacteria and viral. There is a Tick-borne encephalitis, that should also be considered. With the speech slur, tremors, etc., I say this warrants being seen in the E. R.
In the meantime, even with nausea, be sure to eat something to keep your blood sugar stable. A little ginger from your kitchen spices can be made into tea that may help calm the nausea.
Just in case they'd want to do a spinal tap (lumbar puncture) to test for lyme, that is NOT an accurate test. They may find other things, but lyme does not test well that way.
Hopefully, someone with you can contact IGENEX for advice on testing. www.igenex.com
Best of luck and may you find the best of care - as soon as possible.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- serenitylady55,
Please let us know if you were able to get medical care. I hope things are coming along for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic