posted
I am a 43 year old male, and I feel that I have Chronic Lyme disease. I have always been a healthy active person, exercising 5-6 days per week, and eating nutritious meals. I have never smoked, never experimented with recreational drugs. I used to be a social drinker in the past,
but now, 1 drink will give me a morning hangover, and 2 will give me a half day hangover, so I quit altogether I have been suffering with a host of symptoms for years, and more symptoms are appearing regularly, with little explanation.
I have seen a multitude of doctors, none of which have a complete answer. I have been diagnosed with "Lewis Sumner Syndrome" by a very reputable Neurologist, and have been given 3 months of IVIG treatments,
due to the painful neuropathy in my left arm and hand, as well as pronounced muscle weakness. I am a type 2 diabetic, although my A1C ranges from (5.9 - 6.7), yet I have painful soles, numbness and tingling in both feet, and I am losing my toenails.
My fingers are always cold, every muscle is weak and sore, every single joint aches, Ive had multiple connective tissue surgeries in my joints, I have 4 herniated discs all on one side L3-L4-L5-S1, with severe pain in my lower back and sciatica in both legs, causing me to have repeated epidural steroid injections.
I have terrible pain in my neck, and a cervical MRI shows multiple cysts on my spine, which all doctors feel are nothing, although each doctor stares at the MRI.
I can vividly remember events from 35 years ago, yet I have a brain fog that makes it diffuclt what I had for dinner 2 days ago. I have strange lesions all over my body, in which the Dermo today called them Prurigo Nodules, but I insisted having them biopsied just in case.
I have urinary incontinence that has just shown up over the past 2 weeks, and an initial ultrasound shows normal activity of the bladder.
Last October, I became very ill (bronchitis), and received prednisone, and an antibiotic (Zpack). When that had no affect, a culture of my nasal cavity showed high levels of ecoli, as well as candida.
14 days of oral Levaquin alongside 30 days levaquin/fluconazole applied via nasal jet-nebulizer appeared to help that. I have frequent diarrhea, and more often than not, a bloated gut area.
I have zero energy, and recent blood work showed low Vitamin D, low Cortisol, low Testosterone, and low DHEA levels. I have lived in the Massachusetts / Southern New Hampshire area since 1981,
and I own an inspection business that almost daily, puts me in locations such as Cape Cod, Marthas Vineyard, Bakers Island, Cuttyhunk Island etc.
To make matters worse, I have had Deer on my property feeding off my landscaping almost daily, from 2006 to the present. The first engorged tick I removed from my body was in 1984, when I was 14, and didnt really know what Lyme was at the time.
I have removed multiple Deer tick from my clothing and skin, but do not recall removing an embedded Deer tick per say. I have removed several ticks from both my wife, and one of my children, and carefully saved the tick, and sent them to a lab for Lyme/co-infection testing, where they came back as negative.
I have tested reactive for the IGG band 58 on multiple standard Quest lab Lyme tests, and negative for co-infection, but my most recent Quest lab test has come back negative for all bands.
I am now wating for the results of my $1,000 worth of Igenex testing, but have prepared myself for the possible negative results, based on my previous Antibiotics/Corticosteroids/Intravenous-Immunoglobulin remedies that may actually disguise the disease in some way.
I have educated myself on Lyme through reading countless others stories (usually on the internet during late night sleepless hours), and I am now fully aware of the dangers and difficulties of my previous Antibiotic/Corticosteroid/Intravenous-Immunoglobulin treatments.
Thankfully, I have a terrific Primary care that keeps herself educated on Chronic Lyme, and has successfully proven 12 of her patients to have Lyme, that were previously told they did not through previous standard testing. She feels I need to be treated as having Chronic Lyme.
Please help me by agreeing with my current assessment, or possibly telling me something else I may be overlooking, before I lose what is left of my mind.
Thank you in advance
[ 10-23-2013, 03:48 PM: Message edited by: Lymetoo ]
Posts: 9 | From Southern New Hampshire | Registered: Oct 2013
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gmb
Unregistered
posted
Make an appointment with the best LLMD you can afford ASAP. The steroid stuff is troubling.
Go back and break up your post into small two or three sentence paragraphs. Most of us cannot read through such dense, run together text.
posted
I edited your post.. hope you don't mind! We want everyone to be able to read it so they can help you.
Your story SCREAMS Lyme and candida. You need to get both under control and stay away from steroids. If you address the Lyme with the help of a good LLMD, you will not need the steroids.
Steroids will make the Lyme go DEEP... and Yes, it will skew testing.
A lot of people with multiple infections have hypercoagulation.
Ticks DO NOT need to be attached for an extended period of time to transmit disease. They DO NOT need to be engorged to transmit diseases.
I have several tick-born diseases and can't recall a tick ever being on me. Tick are the worst when they are in nymph form (the size of a period).
Posts: 2839 | From California | Registered: Jul 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome to Lymenet!
You live in an endemic area. Odds are that you have lyme. At least you recognize that you have it. Most people don't even know about it, or just ignore it, or live in denial.
I've had prednesone and abx too, and my standard lab testing came back negative. It means nothing as the standard western blot tests are flawed (substantial false negative rate on this test).
I know you have a great doc, but doctors who take insurance are limited as far as giving the best form of Lyme treatment to their patients (insurance companies force them to follow idsa guidelines, even though the guidelines are out of date).
I would look for the very best LLMD that you can find. Go for an ILADS doc (International Lyme and Associated Diseases Society). They are cutting edge when it comes to lyme. You can find one at www.lymediseaseassociation.org.
Most people who are bit usually end up with the three Bs: borrelia, babesia and bart. Odds are you have one or more of these, and then some. An LLMD knows how to treat these. You will be pleasantly surprised as some of the other things you have get better after proper treatment.
Since you live and work in an endemic area, you can spray your clothes with tick repellant (at least your shoes and the bottom of your pants). BTW, it's not the deer that spread the ticks the most, it's the deer mice. We have deer on our property every day. They are such beautiful creatures. We just inspect ourselves daily, and avoid the areas ticks love (under trees, rock walls, etc).
Also, parasites are a huge part of lyme. It was stated at the 2012 ILADS conference last year that parasites were THE number one co infection. That's huge. There is a great thread here called: THE PARASITE WARRIOR'S SUPPORT THREAD. Eventually people end up reading it when they see that they are not getting better. Parasites are THAT important, and are often the most over looked co infection (testing is flawed).
Hang in there. It gets better with proper treatment, and keep an open mind when it comes to treating.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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I thoroughly apologize for my giant (run-on sentence) for a first post. In actuality, that was bits and pieces of my email to (contact@ilads), in order to find a qualified LLMD.
I was attempting to include a few of my symptoms to add legitimacy to my LLMD request, and found myself basically needing to get everything out.
I have put off the joining of a forum for too long, and just wanted to get my info all out there. I will try to be more literate moving forward.
I am a hands on father of a 20 month old boy, and 5 year old girl, both of which no not accept a Father that just wants to lie on the floor. That is probably the hardest part for me. I consider myself a manly man, but yet I have been crying quite a bit lately, and sometimes I don't even know why.
I sent my blood samples to Igenex on Monday 10/14, so hopefully any day now. I did request the CD57, the full co-infections, western blot etc....
My primary care doc knew more of what to select, I just remember looking at the pricing as being over $1k.
My most recent epidural injection was 8/30, and I was due to have another 10/25. I will cancel that injection, and all others moving forward.
I can only hope to actually have an appointment with an LLMD in the very near future.
I realize there are some LLMD's that may be better than others, I am only hoping that whichever doctor I end up with, can put the pieces together, and help me on this long road of putting my life back together.
Finally, a group of people that can appreciate the dozens of doctors that have given me "that look", as soon as I mention the word (Lyme) to them. I will never get used to "that look".
Thank you all.
[ 10-25-2013, 04:10 AM: Message edited by: Robin123 ]
Posts: 9 | From Southern New Hampshire | Registered: Oct 2013
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quote:Originally posted by Lymetoo: But what took your PCP so long to test you for Lyme??
Lymetoo,
Since I am self employed, I pay $3,050 per month for health insurance. Every countless specialist visit costs me $40,on top of surgery co-pays and scripts, physical therapy and so on.
The day I came back from the Neurologist (approx 3 years ago), and he said, "Lewis Sumner Syndrome", my primary care said WTF is that? She looked up the miniscule amount of info, and said to me, "this sure sounds like Lyme to me! Did he test you for Lyme!?"
The neuro did in fact test me, and of course I was negative on the typical IDSA labs. I was far from Lyme educated at the time, and used poor judgement siding with the specialist,
and not listening to the general practioner that was trying to convince me of spending big money on Igenex testing.
I did agree to have standard blood work for Quest testing w/confection, and even that cost me $430 out of pocket.
I was only band 58 positive, and shared this with Neuro that simply stated "you don't have lyme, and these symptoms are different than Lyme symptoms"
Specialists can be very convincing, especially when "my knowledge" is reading blogs on the Internet, and his is 50 years of research and practising medicine.
That has changed, however, thanks to good people like yourselves. I now realize that I know more about Lyme disease, than my 50 year experienced Neurologist.
Thank God for persistent GP, that has finally focused me on getting the right labs, and pointing in the direction of an LLMD.
[ 10-25-2013, 04:11 AM: Message edited by: Robin123 ]
Posts: 9 | From Southern New Hampshire | Registered: Oct 2013
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Have you been tested for Vitamin B12 deficiency? Any demyelinating disease should include Vitamin B12 deficiency in the differential...and Lyme can also be considered a demyelinating disease...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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quote:Originally posted by Razzle: Have you been tested for Vitamin B12 deficiency? Any demyelinating disease should include Vitamin B12 deficiency in the differential...and Lyme can also be considered a demyelinating disease...
Hi Razzle,
my most recent blood work shows my Vit B-12 to be 607 pg/ml, but my Vitamin D has consistently been deficient.
I've had a total of 6 EMG and nerve conduction tests that show there is some serious nerve damage in my body.
That, and approximately 20 clinical tests to show gains and losses in sensory and strength, all showing a path of getting worse.
Ironically, my neurologist has tested my blood extensively at the very beginning, but not once since.
I has been my primary care that does routine extensive blood work, and has found the Ecoli, Candida, Diabetes, and quite possibly Lyme.
[ 10-25-2013, 04:11 AM: Message edited by: Robin123 ]
Posts: 9 | From Southern New Hampshire | Registered: Oct 2013
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am so glad you decided to join the forum -
It is baffling how these stupid doctors come up with strange rare "conditions and diseases" when lyme is epidemic. Even if they have positive test results, they are fearful of diagnosing it because the CDC persecutes doctors who treat chronic lyme. Read the book Cure Unknown by Pam Weintraub.
All of your symptoms scream Lyme - which is a combination of infections, not just one. Everything you are experiencing can be attributed to one infection or another - or another!
Treatment won't be easy but with the right doctor (critical), you will get better. You should also get tested for Protomyxzoa Rheumatica. It is the latest discovery and most of us have it. You need to get tested for that at Fry Labs in AZ.
Keep coming back!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Van -- Even if the IGeneX test comes back negative you should seriously give antibiotics with an LLMD a trial. What have you got to lose?
If you have been ill for over 3 years it is entirely possible that the lyme test will be negative -- especially since you have primarily neuro symptoms. The sickest patients often have negative lyme tests. No one really knows if they are infected with a different strain of lyme or if it is just the nature of the disease -- the research is just not there.
You know you have been bitten by ticks. That puts you ahead of the game so to speak.
But it will take courage and determination on your part to see you thru treatment.
You will either herx on meds or just feel better. Either way I think you will have a strong indication relatively quickly if you are on the right track. But it will take time to get your health back. It is not an easy road to follow. But it can be done and everyone here will help in any way they can.
Bea Seibert
P.S. The diarrhea and positive candida in your sinuses point to a possible systemic candida problem. I am pretty sure that diabetes also makes candida more likely. All good LLMD's know that candida can become a serious issue with antibiotic treatment and they can advise you regarding probiotics which are an essential part of a complete treatment protocol.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Wow, Van. Yes, you DO know more about Lyme than your neuro. They are usually useless. Can you believe I actually have one who understands how devastating it can be? He was educated in India and has an open mind.
You've been given great advice here. We're very glad you found us!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Van, thx for telling us your story - could you break it up into a couple lines at a time? We have people reading here who cannot handle blocks of text.
Re a positive band 58, that's a heat-shock protein. Many LLMDs think that someone's positive if even one Lyme-specific band shows up.
But really, it's a clinical illness, as not everyone tests positive who has the illness. You definitely have Lyme symptoms!
When you get going with some decent treatment with a Lyme-literate doc, you will start to improve.
Even though you have a family to take care of, you also need to take care of you.
Posts: 13171 | From San Francisco | Registered: May 2006
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-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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quote:Originally posted by Lymetoo: You didn't get a Western Blot from Igenex?? That is the "biggie."
Lymetoo, I checked off almost everything on the Igenex request sheet, with my final bill totaling $1,273.00
I do not believe those results are in my packet for some reason.
Here is my bill...
Anaplasma Phag IGG Anaplasma Phag IGM HME, IGG Antibody HME, IGM Antibody Western blot IGM Western blot IGG Lyme PCR Serum, Genomic Lyme PCR Serum, Plasmid Babesia Antibody IGG Babesia Antibody IGM B Henselae IGG AB B Henselae IGM AB Babesia Fish Lyme PCR Whole blood, Genomic Lyme PCR Whole blood, Plasmid Lyme IFA G/M/A Screen CD57
I am confused. Even my Quest Labs (Western Blot) test had all the 19, 23, 28bands etc listed, whether negative or not. It appears that I did not receive a similar page from Igenex?
quote:Originally posted by bigstan: You got chronic Lyme man, be ready for a long haul no quick fix.
If you can't find a doc to help you may have to self treat easy to do if you have knowledge, not easy to beat.
Thanks for the info on CD57 BigStan... Based on the information regarding CD57, and my numbers, I would be classified as classic "chronic Lyme disease. The only positive news right now, is that I managed to get an appointment with an excellent LLMD for this week, due to someone else's cancellation.
Posts: 9 | From Southern New Hampshire | Registered: Oct 2013
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posted
You might be missing a page... Igenex usually includes a list of all the bands with plus and minus signs next to each band. You could call them and ask for more information. Did they send the results to your doctor? Did he get all the pages?
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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quote:Originally posted by Lymetoo: The Western Blot takes 2-3 wks to come in. Has it been that long yet?
Today was 2 weeks exactly, and I had my 3 hour LLMD appointment today. Doc (she) called Igenex while I was there, and Igenex faxed the Western Blot over...
LLMD has ordered the Igenex test that attempts to clarify if a specific band is positive or negative (that was previously Indeterminate)
Doc also feels that I have Bartonella, as well as multiple other conditions she is testing for through various tests.
Posts: 9 | From Southern New Hampshire | Registered: Oct 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
It sounds like you are in good hands (care of LLMD)
That 3 hour appt. is exhausting, isn't it? My young daughter and I did a lot of treatment appointments together,
me speaking for both of us, then 3 hour drive back home with her- it left me fried. Next day writing out separate long notes and treatments.
It can get better---- it can. Hope you are on the path to better health very soon.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Sounds like you have a good doc.
Honestly, finding a good doc is half the battle, so you're already ahead of the game Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Good job,now work on getting well. Don't hesitate to reach out,we are all in this together.
Posts: 342 | From northern california | Registered: Dec 2010
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