I am hoping someone could help me with some opinions and information. My husband has been sick since last October. It started with extreme fatigue, constant headaches, low grade fever (which doctor's dismissed as not considered a fever)a rapid growing tumor in his neck (which was removed and was non-cancerous), liver difficulties, pain in his shoulders, hands and as months continued to go on vision difficulties in one eye, then lost vision in both eyes (optic neuritis) was hospitalized and given steroids and regained some of his vision. In the last month, he has had on and off numbness in his leg. The last three to four days extreme fatigue and headache and periods of I guess hot flashes. He has been to the following doctors: two neurologists, two rheumotologists, gastro dr, opthamologist, infectious disease doctor, and primary care. A few years ago, he was in Arkansas in the woods with two others one of which had the rash and was diagnosed with Lyme...the other is in the same boat as my husband and no one can figure out what is going on. He explained that there were ticks everywhere and all different types and they would pick ticks off of eachother every night. The rheumotologists think it is multiple sclerosis, the neurologists say that it is NOT and they have emphasized NOT mulitple sclerosis and one indicated that it is could just be a "virus going through your body". Infectious disease doctor (who now from what I have been reading doesn't seem to be a Lyme-Literate doctor) has tested him multiple times for Lyme throughout this time period and he has always been negative. He has had spinal fluid taken and has had a Western Blot test several months ago and the lab found nothing. She says he does not have Lyme because it would leave a "stamp" on the test ( I think she is referring to antibodies). He always has a constant headache and in the past few days has been sleeping all the time.
I guess my questions would be does this sound like Lyme to you all?
Are any of these symptoms not consistent with Lyme?
Do you get a period of good days and then symptoms return?
Have any of you been tested over and over and still comes back negative.
Is there anyone that can help us here in Massachusetts?
I don't know what else to do...it's hard to see a loved one starting to give up. Are we way "off base" here. I have been saying Lyme disease all along, but no one will listen. Can it be fatal if he doesn't get treatment? Please can anyone help?
posted
Many of us here have seen multiple doctors and had numerous negative blood tests for Lyme. There is also the problem of coinfections which are every bit as hard to pull a positive as Lyme is. It sure sounds like your husband has Lyme, and with the number of tick bites, I highly doubt that is his only infection.
I know babesia is pretty common with Lyme and causes sweats. Also, one doc I saw said, "Everybody with Lyme has bartonella." Ehrlichia is another one. Ehrlichia can be fatal, too.
And all of these are treated with different antibiotics, so depending on which one is 'active' at the time and how worn out the person's immune system is - that determines the accuracy of the test pretty much.
I myself have had several Lyme tests over the years - all negative until late last year - and I was knocking on death's door by then.
What lab has your husband used for his testing? I know IGeneX is one that a lot of us on here use. I still show some Lyme bands on a Lab Corps Western Blot, but I pulled 4 bands on the IGeneX test.
Also, it's important to address possible food allergies that can amplify symptoms.
Perhaps others on here can give you some more input. I hope he feels better soon. Found this for you:
They will send you a free test kit. You will need to have his blood test drawn on a Monday or a Tuesday, as it will be sent to California.
Also, even if he tests negative, there are doctors out there that will treat based on symptoms alone - Lyme Literate Medical Doctors.
Go to the doctors area and post that you are looking for an LLMD in your city. Many of us travel to be treated. But often as they start treating a bug, coinfections will finally start showing up.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Kris,
It does sound like Lyme especially given the history of embedded ticks.
Do you know which lab did your husband's Western Blot?
A lot of times, doctors will read the negative for CDC criteria and deem the test negative
When in fact Lyme specific bands are present.
Also there are only a few labs which specialize in Tick Borne diseases.
Igenex in Ca. is one. They test all the bands.
There are many people here on the board that test negative and yet still have Lyme.
There are many reasons for a negative Western Blot.
I would suggest you find your husband a Lyme Literate Medical Doctor asap.
And if possible, don't let your husband get any more steroid shots or orals.
They so depress the immune system and Lyme loves that.
Hope this helps. BTW, I had a Quest Western Blot done (didn't know any better)
I consider myself lucky I had one Lyme specific band come back.
I had my husband and children both tested via Igenex.
We all have Lyme as do our neighbors (7/8).
Hang in there. If your husband gets the help he needs he may be able to pass
This invaluable info. to his friend who is also suffering.
Did the one guy with the bulls-eye rash get diagnosed and treated?
Just curious.
Don't give up. Find a LLMD. Read the newbie info.
Look at all of the symptoms of Lyme disease.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Wow, it sounds like your husband is going through exactly what I've been through. I continue to test negative for lyme, and all of the local doctors thought I was crazy until a LLMD put me on antibiotics and I started to get better. Then four weeks later, I had a "herx" (where your symptoms get really bad) and landed in the hospital. They thought I had an allergic reaction to the antibiotics and took me off of them. Long story short, I'm with an LLMD now who is monitoring my antibiotics regimin and herxes and life is getting better.
Two suggestions though,
1. Go to the ILADS sight and do a search for an llmd in your area.
2. Try antibiotics. If he gets better on them and then suddenly worse, it is probably lyme and the llmd can help.
DON'T GIVE UP!
Jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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WildCondor
Unregistered
posted
Hi there
Sent you a Private message... Please read up all the good info on this site, and all the Lymelinks, it will really help you understand how common these misdiagnosis and multiple doctors are. Exposure to ticks and the timing of the illness sure make a strong connection that it could be Lyme.
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posted
Don't give up before you've even started. Today is the first day of the rest of your husband's life. Now he knows it COULD indeed be Lyme.....and why wouldn't it be, considering his exposure to MANY ticks in AR???
Many people have negative tests for Lyme disease. The tests are lousy to say the least. Lyme is a clinical diagnosis.
Post in Seeking a Doctor and we will help you find an LLMD in your area.
Please do NOT stop your search until he gets a Western Blot from Igenex Lab and is seen by a REAL Lyme disease dr!!!
ID drs {ducks, as we call them} are clueless when it comes to diagnosing Lyme disease and they are HOPELESSLY inadequate when it comes to TREATING Lyme disease!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Spinal taps find lyme less than 20% of the time. If you DO find it in a spinal tap, that's quite definitive. However, lyme likes to live in tissue, not blood or cerebrospinal fluid.
Most "learned" neurologists are clueless about this.
As stated above, most labs have a horrible track record at testing for lyme.
Here's a little eye-opening article by LLMD Dr. S. The tests really are terrible unless you use a good lab that specializes only in tickborne diseases. But don't take my word for it -- these are peer-reviewed studies.
1. Lyme can hide by a number of ways from your immune system.
2. It your immune system is not tuned up and working very well you can be found fully negative on multiple lab tests.
3. Most tests for Lyme are antibody tests. Antibodies, also known as immunoglobulins, are proteins that recognize something foreign in the body - like infecting bacteria and help remove it. The first and most common test your doctor usually orders is an ELISA antibody test. Again, if the Lyme is hiding well or your immune system is fair, you will come up normal. Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).
In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease.
But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people.
4. For some, the Lab is a place of perfect science. A place which has purely objective fact. In Lyme this is not valid. In one study, 55% of the labs could not accurately identify blood samples with Lyme, which led to the conclusion in a prestigious infection journal, that: screening tests for Lyme disease are not adequate (Journal of Clinical Microbiology 35:537-543, 1997). What About the Western Blot? Is That Definitive?
The Western Blot is merely another antibody test. However, it is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990). _____________________________________________
Find a good lab. But especially, find a good LLMD. Your husband can start getting better! Hang in there!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The fact that one of the three had a rash that caused a diagnosis of lyme (probably a bullseye rash)and they were exposed to many ticks and your husband and the other person are both sick is highly suspicious of lyme and in fact, I'd be surprised if they didn't have it or some other tick infection.
Sounds like it could well be lyme and/or co-infections. I'm glad you have the opportunity to get some help for him now rather than later. Hopefully his friend will also seek help from an LLMD. Don't waste time on a duck get to an ILADS LLMD.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I guess my questions would be does this sound like Lyme to you all?
*********************YES YES YES it could definitely be Lyme- or other TBDs- definitely could be!!!
Are any of these symptoms not consistent with Lyme?
***************No.
Do you get a period of good days and then symptoms return?
******************YES in the beginning, waxes & anes, if you get really really bad you stop having good days- many people manage to be in middle muddling state for years. Me, i went downhill within a year really fast-
Have any of you been tested over and over and still comes back negative.
******************Glenn Edward Killion was a Californian who repeatedly tested negative and had negative spinals and then he died and his widow and Mom sent his tissue samples to Dr. Paul Duray at teh NIH (National Inst Health) and there were Lyme spirochetes in his heart & brain- He died of Lyme age 36 poor guy- never a positive test-
Is there anyone that can help us here in Massachusetts?
**************YES- MassLyme AT aol.com can help you- he is wonderful- his name is John C.
I don't know what else to do...it's hard to see a loved one starting to give up. Are we way "off base" here. I have been saying Lyme disease all along, but no one will listen. Can it be fatal if he doesn't get treatment? Please can anyone help?
************* Yes it can be fatal. I web and have for 7 years now The Lyme Disease Memorial Page at http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html BUT the main causes of death are suicide, anoxic encephalopathy or heart issues. If he has not developed encephalopathy and is not suicidal, the heart stuff is usually evident ahead of time- so barring those he should hopefully be okay!!
Sorry this was so long.
****************Heck, you belong here until you get a NO from an LLMD. Your husband sounds very ticky. I don't say that a lot. I would bet it is a TBD and I have never said that frankly!!! But it sounds like he has had a thorough Differential Diagnosis ALREADY and TBDs are very common!!!
In California they tested a community and found 23% was positive for Lyme or another TBD!!!! 23%!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Of people, not ticks!!!
And that's in California...!!!
But seriously, I am glad you love your husband. He is lucky. Don't give up on him!!!
Even if he gets worse people recover fully at his presentation level all the time!!! He just needs a real LLMD-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Read this testimony from an LLMD to the NEW YORK STATE ASSEMBLY STANDING COMMITTEE ON HEALTH about lyme seronegative tests!!
posted
Sounds like Lyme. Make sure he gets, at least, Igenex Western blots IgG and IgM. You'll have to pay - it's worth it. Look at the details of the results YOURSELF and see if he has ANY Bb-specific bands (or, post the results here to get help in interpreting). I agree that he may not have had good testing - MANY docs consider CDC interpretation to be conclusive, whereas it is fatally flawed. And MANY regard a negative ELISA as more definitive than a Western blot, even though that's totally wrong.
Posts: 74 | From MA | Registered: May 2007
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