posted
My wife just got diagnosed with lyme a week ago. We've concluded she's in the late stage.
About 11 months ago she had bad headaches that we had checked out and were attributed to sinus issues (had an MRI done, etc.) They went away with sinus treatment. Though looking back, those could have been her first symptoms of lyme.
About 2 weeks ago her knee swelled and about 1.5 weeks later after a bunch of doctor visits they did a lyme test and it came back positive.
I'm just curious what some people with experiene can tell us about what to expect going forward, especially symptom wise.
She has never shown any other signs other than what I stated above; no fatigue, nothing other than the headaches and swollen knee.
She has a 30 day script for Doxycycline, and her Primary Care (who is not a LLMD) wants to see her again in the last week of the script, probably to give her more (he said that).
We are looking for a LLMD and probably will be contacting one in the next few days.
The Local Health Dept. called to register her case, the woman whom my wife talked to seemed pretty knowledgeable and gave us a LLMD's name, she also said that my wife was in the "Late Stages" but also said that the good news was her "Levels were low". My wife didn't ask enough questions and neither of us know what was meant by that. I can only assume she meant the antibodies to the lyme. Please correct me if I'm wrong or let me know what was meant by this. Thanks in advance for any help!
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Welcome to you both (but so sorry that you are dealing with this and so sorry that I'm loading up all this information rather than telling you where the beach is or to have a great vacation).
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The local health department gave you the name of a LLMD? I sure love to know who (rhetorically, speaking).
Be absolutely positive that name is for a real LLMD, one who is ILADS-educated. See the controversy article below.
Having low levels means nothing. Lyme is lyme. I am concerned that the person with the health department is not all that educated in this.
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While I'm glad your wife has no fatigue and nothing other than headache and swollen knee, these are important signs and you sure don't want it to get worse. Usually, with late-stage, symptoms are much worse and can involve every body function.
Symptom-wise, treatment may make your wife feel worse before getting better. That will be explained later.
Being only on doxycycline concerns me as the cyst form of lyme is not being addressed. A combination treatment is usually required.
I don't know if your PCP was going to expand treatment later or just continue doxy or stop it. The cyst form must be addressed and doxy does not do that. Some begin on doxy and then add other things. Since your doctor did not say this, I assume she is going with mono-treatment.
Also, your wife should be tested for coinfections. Ticks carry many different infections and it is common for lyme patients to have a combination of those.
I think she should also be taking some liver support so that the medicine is not too hard on her liver. When lyme is killed, it emits lots of toxins and that can make a patient feel worse (it's called Herxheimer reaction).
The lyme toxins, and the meds themselves, can overwhelm the liver. A supplement like milk thistle can help protect the liver and also support it so that works better to filter out toxins.
Of course, avoiding alcohol is important as is eating well and getting good rest and gentle exercise (not aerobics, though).
With apologies, I'll come back and post a lot of links for you two to step your way through this. It does sound like her PCP is on board and knows that this may require more than a short course.
I do hope that your PCP will be on board with whatever your wife needs. That would be good. However, she may need to find a good LLMD to be sure that treatment is all that it should be so that she is not dealing with this for the rest of her life.
She has a chance now to do this right.
Oh, in addition to milk thistle, I hope the PCP recommended PROBIOTICS. Anyone (man or woman) who is on abx (antibiotics) must take probiotics.
I'd also take Olive Leaf Extract to help prevent systemic candida (fungal) infection.
It is a tape of a great show on lyme disease done by a Boston TV station a few months ago.
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it.
You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
=======
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
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.
--
Note: the LDA is not to be confused with the LDF (Lyme Disease Foundation as they are primarily a voice for the IDSA and ignore ILADS research.)
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:
posted
What would address the Cyst? I'm assuming the cyst is the swollen knee? It is going down on it's own, and is almost gone now. Her range of motion in her leg is almost 100% and the swelling is almost gone now.
At her next doctor visit which is soon, I'm going to try to ask as many questions as possible, about treatment as well as further testing.
Hopefully our PCP will be on board with a LLMD and work together... we'll see shortly I guess.
And yes, the Health Official sent us a doctor's name via email. There are none in our area, this one is about a 2.5 hour drive away. We'll be calling him soon, fortunately he's right near good friends of ours, so that will make the trip a bit easier.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You need to call and find out about that LLMD that the health department recommended. You need to know if he practices using the IDSA guidelines or the ILADS guidelines.
Ask about the doctor's professional affiliations. Is he a member of IDSA? Of ILADS?
You need to know before your schedule how much that doctor knows and how they will proceed. This is of upmost importance.
-----------------------
It's great to hear that your wife is seeing some improvement.
Flagyl addresses the cyst form. Some do better with a similar drug, Tindamax. They are close and have similar action but not exactly the same in how they address the cyst.
There are also some enzymes (Wobenzyme) or Grapefruit Seed Extract capsules that can help break through the biofilm around the bacteria.
posted
Wow... I'm overwhelmed right now. Looks like we've got a lot of reading to do!
I also had a book reserved today at B&N "Cure Unknown". I'm sure a lot of you have read it.
Lots of education to do.
I understand the controversy in the medical field on treatment, and a lot is insurance company driven; if we go to a LLMD, will insurance cover it? Will they cover longer term treatment? If not, typically what is the annual cost of treatment (out of pocket?)
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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posted
Keebler, thank you, we will ask those questions of the doctor.
If he turns out the be legit I can PM you his name.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Out-of-pocket costs here many say is $50,000 - $100,000 long-term.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Some ILADS-educated LLMDs take insurance but most do not because the insurance companies refuse to pay for the longer appointments required for a proper history and clinical evaluation.
Even if that LLMD does not take insurance, some insurance companies will reimburse a portion, sometimes.
Regardless, it is tax deductible as are the meds and the supplements (since they are required for a specific condition and not just general well-being).
Some LLMD cost more than others. You can contact your local support group for details. Or talk to those in support groups near the LLMD you are considering.
The cost out-of-pocket can vary widely. With your PCP on board, this will help, though.
You can also explore other avenues but, first, I think a full clinical exam and assessing for possible co-infections should be done by an ILADS LLMD.
From there, you may choose pharmaceutical treatment or a complementary protocol (see Zhang, Buhner books above) or get a rife machine.
Some combine pharmaceutical with complementary. Most lyme patients simply do not get well without some supplements to help the body get stronger but that approach can have a narrow or broad span.
Sorry for the vagueness and complexity. Budget concerns are high for everyone right now. There is a lot to consider and there are ways to keep the costs down.
There is a big of a learning curve when it comes to Lyme, you're not alone to feel overwhelmed! Unfortunately, since so many of us experienced delayed diagnoses and barriers to treatment, we place the burden on ourselves to navigate this disease.
Personally, I've benefited so much from sites like this and patient-to-patient networking.
Sorry you need to be here, but nice to meet you.
Best of luck to your wife as she starts treatment.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
Thank you for the kind words and the information, it's all appreciated right now.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Remember to take a little break from the seriousness of all this:
quote:Originally posted by BC: What would address the Cyst? I'm assuming the cyst is the swollen knee? It is going down on it's own, and is almost gone now. Her range of motion in her leg is almost 100% and the swelling is almost gone now.
BC,
Glad to hear she is feeling better.
To echo everyone else: definitely find yourself
a LLMD!
The "cyst" form of borrelia refers to one of the
shapes (spirochete/corkscrew, L-shape & cyst)
that it can morph into. They are Shape-shifters.
The cyst form protects the bacteria from threats
in their environment (our bodies).
It is not detectable by the immune system and is
resistent to most antibiotics.
The shape is that of a spore. It does not refer
to a liquid-filled cyst.
Here is a video that explains it a little. Not to overload you anymore than you are already:
posted
Gotcha... thanks! I just assumed swollen = cyst.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
BC I had my headaches and body aches about 6 months
after initial infection. From there I went to
extreme bone pains, dizziness and loss of gait. I
would not put much punkin in determining how long
she has had it by the tests but by how long you had
symptoms. MOST IMPORTANT IS GET COPIES OF TEST RESULTS.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
We've narrowed down her length of time having it by the symptoms and we've guessed it's been about 11 months now. We were in a heavily wooded state park last June and she got the headaches in July and the swollen knee a few weeks ago, the timeline makes sense.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Looks like you have a ton of information and resources already. Good luck to you and I hope your able to get good care.
I was curious if others who were told they were CDC positive all got calls from their local health departments?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Well, folks. Things are looking up.
BC and I have communicated by PM he said that I can share this so that we all know they will be in good hands:
The LLMD name they were given by their County Health Department is an EXCELLENT CHOICE and a top notch board member of ILADS (and also a member of the IDSA). Actually, the health dept. gave them several names and they chose this one for the location.
I gave BC METALLIC BLUE's email so that they can get some patient reviews so as to learn more about this doctor's style as they make their preparations.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I am sorry your wife is going through this.
Everyone else has given you excellent advice so I need not say more. The posters on Lymenet are the best!
I am truly astonished that your wife is being helped by your PCP and that her blood test was positive. That is unusual. Also, surprising is that the health department called and is assisting her. Maybe things are changing for the good.
You mentioned "Cure Unknown" and that is a great place to start your research. Further along, you might want to read "The Lyme Disease Solution" by Kenneth Singleton. It is excellent as well.
If you have the opportunity to see the documentary "Under Our Skin" it will shed even more light on what to expect and the controversy surrounding Lyme.
Best of luck to your wife.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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bettyg
Unregistered
posted
welcome!
keebler has done an outstanding job as usual on giving you the essentials and things for you to read later also; don't feel like you have to do all this reading now.
skim it, and read what is important at this state of the game.
glad you/she have emailed by pm; i was going to ask your drs. name you were going to go to since i have nationwide llmd list i'd help you with; but she has assured us you will be in good hands!! excellent!
some of this may be a repeat of what keebler posted earlier; rest is new ... we each have our own little speels of info we want to share with all newbies.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
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.
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/
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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. 
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