posted
In coming to this forum, when I read lists of Lyme disease symptoms there are so many it's kind of overwhelming. My husband has some of these symptoms, most notable muscle spasms and pain. I've watched him waste away over five years as doctors throw up their hands. Every test is "normal" and every doctor is stumped.
We haven't been to a LLMD. Could it be lyme? I'm sure it could. But it could also be something else totally not related to tick born diseases.
I read some of the stories of years and years (not to mention money) some of you have devoted to lyme treatment. I have a fear that if we go to a LLMD and they think it might be lyme, we could spend years going down that road (and again lots of $$) only to find no help because it wasn't lyme in the first place.
How does someone start down this path and figure out if it is something that can help without devoting a ton of time and resources? We did a couple of lyme tests (all negative) and his primary doctor gave him one regular dose round of doxy just to humor us. But I understand a negative tests doesn't mean no lyme and a low dose, two week treament of doxy wouldn't touch it anyway.
So how can we know if this is something worth exploring?
Posts: 8 | From MN | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Could it be lyme? " YES, it could
" But it could also be something else totally not related to tick born diseases?" YES, it could. -------
A good LLMD will know how to distinguish between one of the many tick-borne infections, combinations of such - or other possible diagnoses, including other chronic stealth infections such as Cpn, etc.
Believe me, sad as it is, a doctor who is not lyme literate will be stumped forever. It is vital to get to a good LLMD. You might ask if they are knowledgeable about the full range of chronic stealth infections, too.
I'll come back with a set on links for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- a good video that explains the controversy, go to this link:
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.
-===
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.
UOS wins top award at International Health Film Festival
UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians.
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.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
Abstract Excerpts:
Background
The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum. We investigated whether a similar situation may occur in Lyme neuroborreliosis.
. . .
Conclusion
The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis.
The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis.
The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form.
==================
The first article has much attention on both lyme and Cpn (Chlamydia pneumonia, another chronic stealth infection):
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
In my experience, I was through numerous doctors and many, many tests. They tested for just about everything, and all tests came back normal.
At the urging of a family member who had been through the same thing for 3 years, I saw an LLMD who ran the IgeneX tests and actually LISTENED to me.
He eventually determined that I do have Lyme and Ehrlichia, and the jury is still out over Babesia.
I understand your concern over more doctors and mmore tests, as well as the expense, but if you have been through the ringer and they have found nothing, it is probably worth your while to find an LLMD.
Even if they determine it's not Lyme, they may have some insight as to where to go next. They typically think outside the box more than other doctors.
Good luck!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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quote: How does someone start down this path and figure out if it is something that can help without devoting a ton of time and resources? We did a couple of lyme tests (all negative)
Did you do igenex WB? Personally I am not 100% sure that lyme is what causing my symptoms, but I am convinced I do have it because of lyme specific positive bands in my WB . I also tested positive for CPN (which is another bacterial infection)
All in all I dont know if those are what causing my symptoms, but all things considered I decided that I would concentrate on eliminating those things first. If not for positive bacterial infections titers I would personally not be comfortable going abx route.
If you done Igenex WB and it shows absolutely no bands (except 41 ) then maybe explore viral infections? There are other things too -such as hormonal dysbalance. People here even reported their symptoms causes by herniated disks in neck.
Posts: 856 | From MA | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Re: coltman's mention of herniated disks in neck . ..
you might also want to check out Chiari Malformation. I don't know if that would cause "wasting away" as you describe but it sure can cause a lot of pain and cognitive dysfunction.
I would think, though, that Mayo would have been able to at least consider that and rule it out. It takes a very special kind of imaging test, a regular MRI or CT won't show it so it would have been ordered with special (uh - word loss here) parameters (?) when doing the test. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
If the Drs have ruled EVERYTHING out over 5 years you're not left with much.
But strange as it seems, that itself, in many ways, is a lyme diagnosis.
When there is something wrong, and the Drs can't find anything, they usually give a diagnosis of Chronic Fatigue Syndrome, Fibro Myalgia, (which are just acknowledgement of symptoms of unknown origin with no cure) or depression. That is the medical system's way of bailing out.
Pain and muscle spams can be definitely associated with a lyme infection. And there are other co-infections that are tick borne that can contribute.
Definitely explore lyme by going to a LLMD. At this point, what else can you do? At least you can rule it out. At best it could be lyme and then there is treatment available.
You have come here to a good place and you will find tons of support and help.
Please keep us up to date. I hope your husband gets better.
Good luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Make sure your husband has been tested for celiac disease, thyroid issues and Vitamin D deficiency (25-OH). If those are normal, and indeed the doctors have tested him for lots of other things, then consider infectious pathogens....lyme and viruses.
People here will guide you on lyme testing, although I would add to get tested at Stonybrook and MDL lab for a complete picture.
Also get tested for viruses. They can cause the same symptoms as lyme. Do a search using my member number and the words "viral testing" and you should get some info.
You also might want to try a 400 mg Magnesium supplement and see if it relieves his muscle spasms....
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Timaca, where on earth do you find docs willing to send your blood to MDL, Stoneybrook, and others? All docs I see worship LabCorp. Of course, LLMDs use Igenex or else since they are the only 'real deal' lab.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I agree with Lymetoo. We accidentally found my lyme. Our doctor suggested I be tested for micoplasma infections. My husband called many labs, talked to technicians and was told to order a PCR test.
We did and they found it even though I was negative on Western Blot tests. When I finally got to a good LLMD he ordered more tests from Igenex and LabCorp. Guess what. They found another bacteria and they are now testing for even more.
My husband is also going to be tested. He has had fibromyalgia for years and our doctor thinks he may have lyme, too. He said that he treats many couples with it.
IV antibiotics fixed me before and I am hopeful that my current Bicillin injections will work, too. Getting the right lab work done is so important! And sometimes you have to do repeated tests...so be prepared!
But get moving. It is so important to get on to the antibiotics quickly.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
I was real sick for a few years before the Lyme diagnosis. I had Lyme specific bands thru Igenex. I became disabled in 1999. There went my career. I could not get out of bed till noon and then I had to make myself. I was lethargic had absolutely no energy and existed on my couch till bedtime. I felt awful and dropped to 98lbs. I'm 5'6".
I really did not want to live anymore. I had thought Lyme might be it but my Elisa's were negative. I would research on the computer as I could. By this time I had 2 yrs into this hell and all normal labs, MRI's CT's even a barium enema(never again). I had CFS and irritable bowel syndrome.
I finally came across hemochromotosis (a genetic iron metabolizing problem)diagnosed by checking a ferritin, serum iron and tibc.
I had never had a ferritin checked and had seen about 40 physicians by then. Well, my ferritin was real high so after more testing was diagnosed with hemochromotosis. That took 18 months of phlebotomies every 2 wks to get my iron levels down. This was absolutely horrible to go thru. The phlebotomies disable a normal person let alone someone who had been ill as long as I had been.
During this time I had also been checking into adrenal insufficiency. My cortisol levels had been low normal and the endocrinologist pronounced me ok. I wasn't and knew it.
I saw 6 different endocrinologists and finally one of them, the smart one that didn't graduate at the bottom of his class had me go off estrogen for 30 days and rechecked my cortisol and did an ITT stimulation test and I had primary adrenal insufficiency(Addison's Disease) My cortisol level was .01 and I stimmed to .05. I should have stimmed to at least 18. I was really about dead.
Estrogen can raise a cortisol level 2-3 fold. I thought once I got on meds and adjusted the dosages and got the phlebotomies over with I would feel better. Didn't happen.
I still had debilitating fatigue. I would have to lay down and rest just getting dressed. The fatigue was just horrible.
After more Dr's and then flying to L.A. to see an endocrinologist there I had read on-line about( legitimate guy with Cedars-Mt Sanai) I finally got diagnosed with growth hormone deficiency from an arginine stim test. Had an MRI of my pituitary and it was abnormal.
I have all these disease diagnosed now and still feel bad then start to get neuropathy. This tingling stuff even around my lips and burning sensations feet, legs etc.
This entire time my neck caused me a lot of grief. Years before I had had a c-spine x-ray and the Dr. told me I had a little arthritis and would have to live with it so I never brought that up as I had so much other crap going on. My Dr's thought I was semi nuts anyway.
I had MRI's checking for M.S. then had heavy metal testing and my lead was high started on EDTA chelation and got deathly ill.
I ended up in the hospital having high B/P, terrible neck spasms,my joints and muscle were painful I just felt toxic like I had a horrible flu. I felt like I was exhaling fumes. I again asked my Dr about Lyme. My elisa's were normal.
I found this board then went to the closest LLMD to me and was dx'd with Lyme. Elisa's are not accurate. I'm not a lot better but I'm sure I have it just because of all the herx's. Lyme specific bands and retrieving a tick out of my belly button years and years ago is a clue too.
That's what put me in the hospital also. Too much toxin released for my body to handle and had a big herx. That's what my LLMD thinks anyway. Something about biofilms.
It would be worth your while to see a LLMD for testing. Lyme disease can cause the endocrine diseases I have so it's too bad my first Elisa 10 yrs ago was not positive it would have saved me alot of hell. So would have getting a ferritin level checked
He may have a pituitary insufficiency problem or low testosterone so if you haven't been the endocrinology route you might think about that too.
I know 5 yrs is a long time. I hope you find some answers soon. Kudos to you for being such a good wife. I'm sending positive thoughts and prayers your way.
Posts: 383 | From Ar | Registered: May 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Seekhelp~ My LLMD would send the blood to MDL and Stonybrook. My Primary Care Physician will order blood sent to those labs as well as Focus and Arup (for viral testing). Fortunately, my local lab director is very co-operative. I LOVE her.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You're probably overwhelmed by all the information given here thus far.
Let me simplify it for you with two steps.
Step 1: Read Article (Is it a Probability it's Lyme after reading it? See Step 2)
Step 2: Run Igenex Test
Start with reading the article that Keebler posted:
If that convinces you, then spend $200 dollars (you don't have Medicare I suspect, if you do, it covers the test, otherwise you pay out of pocket) and get the IGM and IGG westernblot from the Laboratory called Igenex. They specialize in tick-born infectious disease and have mastered (to the best of current technologies ability) the testing for Lyme Disease. No other laboratory compares in my opinion, and their credibility is assured in plentiful accreditation documents from Medicare and several state health agencies.
If the test is positive, fine. If the test is negative, we'll be the judge of that. There is more to this test than meets the eye. A good LLMD would run this test regardless, so doing it yourself for your own knowledge of whether to pursue Lyme or not is worthwhile.
Call Igenex, ask them to send a test kit to your home address. Tell them it's for the IGG and IGM western blot (Test number #188 and #189)
You'll need to take the test kit to your primary care's office (Or whoever has nurses that can draw blood), and they'll fill the viles from the kit, and they'll (the doctor or N.P. or P.A.) can sign off on the form and provide the fax number. The diagnosis code for the form ICD-9 088.81. The test kit is free (Both to receive and when sending back by Fedex/DHL etc)
So that's all. Read the article, decide whether to run the test or not. 2 steps.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
The most useful self Lyme test I have used is easily done. You take some Cat's Claw and see what the reaction is.
There are very few bacteria that cause a Herx reaction. If you get one, you can be about 95% sure it is Lyme.
This will not help you in the sense that a doctor is probably not going to accept that as evidence of Lyme. But it does allow you to self treat and at least keep the disease in check.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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quote:Originally posted by D Bergy: The most useful self Lyme test I have used is easily done. You take some Cat's Claw and see what the reaction is.
There are very few bacteria that cause a Herx reaction. If you get one, you can be about 95% sure it is Lyme.
What if you dont herx? I took samento for a couple of weeks , didnt notice anything beyound what I already had. And I am 99% positive I have lyme ( positive IGM quest WB, several lyme specific bands on igenex).
Posts: 856 | From MA | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
It does not prove you do not have Lyme 100%, but between the standard test and the self test it gives you more information than you had before.
My wife never had a positive test, but the self test confirmed that Lyme was present. At least we were able to proceed with self treatment on that basis.
By treating with Samento or some other known effective treatment prior to testing, it can also cause your body to recognize the infection, from dead bacteria, and produce antibodies to it. This can help to produce a positive test. It is not 100% effective either, but it can make the difference between being diagnosed or not, in some cases.
Were you already treating prior to using Samento?
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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quote: Were you already treating prior to using Samento?
Started with samento about same time as with 400 mg doxy (maybe a week apart -dont remember now)
Neither doxy , neither samento produced any noticeable symptoms on its own (aside of nausea if when I took doxy on empty stomach a few times)
I had positive quest igm before I did anything at all though (it was that test which prompted me to research into lyme and start doxy because my symtpomts at that time was completely out of whack and I had to do something) .
Posts: 856 | From MA | Registered: Jul 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Do you ever Herx, or is it just that sometimes you do not. I do not know how a person would monitor progress if no Herx is never produced. I have heard that some people never have the reaction.
I took Doxy once when I was bit by a Deer tick. That stuff will even kill my stomach, and it can tolerate a lot.
I know that my wife no longer Herxes from any frequency treatment, but she can feel it, especially when it converts to Spirochete form.
If I did not have her specific reactions to go by, I would be lost in treating her.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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quote:Originally posted by D Bergy: Do you ever Herx, or is it just that sometimes you do not
I don't know -that one month of doxy was only real treatment so far I tried. I had sweats some times at night , had severe light sensitivity , loss of balance, loss vision focus(had trouble focusing my eyes to read ) ,and sever exacerbation of all older symptoms . I did not experience any more symptoms when taking doxy/samento (and I replaced samento with gse 2 weeks in)
quote: . I do not know how a person would monitor progress if no Herx is never produced. I have heard that some people never have the reaction.
By symptoms and lab work. I have plenty stuff wrong which I can measure objectively. With lyme completely resolved I also expect my IgM WB turn negative (and CPN too). Albeit I dont expect that faster than 6 months into my protocol
quote: I took Doxy once when I was bit by a Deer tick. That stuff will even kill my stomach, and it can tolerate a lot.
Did you take it on empty stomach? -it says take it on empty stomach but it is bad bad instruction. I even dug up some research papers on pubmed proving that taking doxy with food doesnt really alter its effectiveness dramatically (and it could be offset by taking more) -instructions are wrong and I bet are based on fact that tetracycline indeed does not get absorbed with food much at all .
When I took even 100mg on empty stomach I had severe nausea, even vomited once. When i was taking it with food I could take up to 400mg at once (didnt try more) with no side effects
Posts: 856 | From MA | Registered: Jul 2009
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That's very interesting you pointed out that you are having Lyme but are still unsure all symptoms are from it. I am on the same page as far as my wife's case is concerned.
She has all the symptoms that's MS-like, and she tested postive for Lyme, Bartonella, and mycoplasma, probably babesia as well. At this point, no one doubts she has Lyme and co-infections, but even her llmd can't say Lyme is the only thing. In her case, the fact that her mother and her brother all had and have similar symptoms is very troubling. Her mother passed away now, supposely from MS.
And her treatment so far has not materialized with any improvement, or herx. It's very discouraging.
Posts: 822 | From midwest | Registered: Apr 2009
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