Never thought I'd be saying this

[nicklemama]

As much as I wanted not to believe it, I got proof undisputed today that my son has/had lyme. He is in the convalescing stage, I guess you call it. I received his Igenex results today at my LLMD appointment. Only one band positive IgM, five bands positive IgG. Seems active infection gone now. All along this ride, he has had lyme. Who would have thought a boy in a state that supposedly has little lyme and has never had a known tick bite would have lyme?

 

I post this to encourage everyone to test for lyme through a reputable testing lab.

 

If you think about it, it makes sense. Sudden onset two days after flumist at age 5. Never had strep prior, that we know of. Never has tested positive for strep through swab, culture or titers. Rarely sick until onset. IVIG twice, many, many months of treatment dose abx and then several years of prophylactic dose augmentin and he flared and exacerbated over and over.

 

He did not get well until his local PANS doc (not an expert) tested him thru Quest and found ehrlichia and anaplasma (lyme neg) and started treating him with augmentin and biaxin in combo. Its been a year on this and he's doing really well. Not 100% but really well.

 

I resisted thinking he could have lyme. I could have saved him a lot of misery and myself a lot of money if I'd just have pursued this years ago. I was nudged into it when I discovered I have lyme. I have been fairly ill and declining for more than a year now. I've been improperly diagnosed with seronegative rheumatoid arthritis for 15 years.

[rowingmom]

Thank you, thank you for this post.

 

Tick / arthropod Borne Disease is more prevalent than we are led to believe. And for those you are encouraging to be tested for lyme, please, please, test for the coinfections as well. Don't assume because a lyme test comes back negative that the other infections can't be involved. Bartonella, anaplasma, ehrlichia, babesia, Rocky Mountain Spotted Fever. These all have arthropod vectors.

 

Doctors assume that because these diseases have not been historically endemic in many areas of North America, that they are not present now. This is wrong.

[amyjoy]

Gosh, at least you know now. Isn't that incredible.

 

and you know, it doesn't have to be a tick bite - it can be mosquitos or fleas - and the tick can be so incredibly small that you just never see it.

[SSS]

Yep, it's a wild ride, only folks here know how wild.

 

I'm sorry you are declining- anything we can do to help? Sending good thoughts to you.

I have some sort of flu right now, and you don't know how good you really feel until you really feel bad.

Ugh. Then the lovely paranoia when you know too much rumbles around.

 

Please don't beat yourself up. Especially about the past. Which is quite rich coming from me, as purging resentment, letting go, mindful grateful thinking is a daily strive here for myself. But that woulda, coulda, shoulda is no good.

 

Lastly, my famous story when someone here first gently suggested Lyme:

Well I thought they were crazy!

My completely sheltered, never been camping, never owned a pet, CA little girl? Huh?

I'd never even seen a tick (no memory of one.)

 

Hang in there Nicklemama.

[Rachel]

Thank you so much for your post. My husband and I are keeping this in our back pocket. I have looked through my son's testing and his coinfections were negative. This testing was done through the same labs that your son had his coinfections done at. However, I do wonder about the western blot testing that was done because it wast done through Quest and some other labs, not Ignex. If my son does not improve on his current treatment plan within the next year, we have decided to request this testing through Ignex. ? My question is Do you also need to do the Lyme bands if nothing shows up on the Western Blot? My son has actually had the Western Blot done several times at different labs and it has always shown to be negative.

 

Hope you get to feeling better soon. Chronic illness is so hard to deal with physically, emotionally and finacially. Keep us posted on your treatments.

[amyjoy]

nickelmama, i thought about your post all night.

 

I hope you are not totally beating yourself up.

 

we are hearing more and more stories like yours.

 

How is your son doing now?

[sf_mom]

I really appreciate your post.

 

We too never thought we were dealing with Lyme until we had antigen and PCR matches 'positive results'. We went to great length with our testing to prove Lyme. I was also convinced we were not dealing with mold. Kids C4A's were normal, we had touch/fixed everything top to bottom in our home 5 years ago, etc. I was very wrong and our older son's mold results were sky high comparatively. For us, it was so much more.

 

However, with each intervention we are closer to our goal of recovery for our entire family.

 

Nicklemama I can not say its been an easy treatment process and that I immediately felt better..... it took time. However, 4 years later I am off antibiotics, gained my spirit back, can be present to our children after 4 p.m., practice yoga 4 times a week and feel better than I have in years. I have been slightly symptomatic for 15 years and those symptoms worsened with each pregnancy and later with each illness and mold exposure.

 

For those that don't live in endemic areas and do not remember a TICK bite, I thought I would post the most recent study regarding sexual transmission out Jan. 27th, 2014. Both my DH, I grew up in endemic areas, both had tons of exposure, my husband was only slightly symptomatic and was easy to treat with herbs and anti-parasitic. I was not symptomatic until I met him.

 

http://www.researchednutritionals.com/information.cfm?id=292

[nicklemama]

Oh, no worries. I'm not beating myself up. I worked my butt off trying to help my son, including an entire year of him gone absolutely crazy and without diagnosis. I do have to share some of the blame though. I read right here time and again to check for Lyme. We are campers and outdoor people. I had a PANDAS dad who is a physician tell me there is no Lyme in Michigan.

 

As for me, thanks for the nice thoughts. I was pretty much asymptomatic for all those years. I was put on plaquenil for RA. It kept my symptoms at bay. It also damaged my retinas. When I went off it, that was the game changer two years ago. I opted for the antibiotic protocol for RA vs taking stronger RA meds. It wasn't enough minocycline to help me with my unknown case of Lyme. If I'd opted for traditional RA meds, I might be suffering those side effects and never know I had Lyme. The last six months have been rather difficult as I hurt in every cell of my body, all the time. I went to the integrative clinic I took my son to, two years ago, in desperation and not wanting to have to take RA meds. I was tested for all sorts of things....adrenal insufficiency, thyroid, food sensitivities, yeast, just about everything imaginable. The doc told me she'd never had a patient at this clinic have tests come back looking so good for someone so sick. Nothing came back out of range. Lyme testing was the next step. Bingo.

 

I will share that this clinic typically only sees really ill patients who've been everywhere else and kids on spectrum, though they are now treating PANDAS kids. My LLMD has been working them and in the last year or so, they've started doing Igenex on patients. They had the CDC call them fairly recently to inquire what was going on because of the numbers of people CDC positive for Lyme they've been getting in a state where Lyme was supposedly rare just two years ago. Now, the CDC acknowledges the West coast of MI is full of Lyme.

 

My son got Lyme in MI. We adopted him so it's not from me. I got Lyme from Oklahoma, where I grew up and had lots of known tick bites by Lone Star ticks. Look up the CDC map and stats. There is no Lyme in Oklahoma or so they say.

 

Anyway, this is a long convoluted way to say thank you and assure everyone that I have some energy back and relief from my pain after my first 30 days of doxycycline. I have a long way to go but I'm hopeful and I'm certainly not as debilitated as some chronic Lyme patients. LLMD said he anticipates two years of treatment due to how long I've had Lyme. Now to find my brain again, lol.

Edited April 1, 2014 by nicklemama

[nicklemama]

Rachel, the Western Blot shows the Lyme bands, from all the labs who do WB, including Quest. You must be talking about the screening test. It's a total waste of money. Not reliable at all.

[mama2alex]

Glad you are finding more answers for your child and yourself! I can relate to the "pain in every cell of my body." That was me until a few months ago. Its great you are starting to feel better!

 

Lyme is so tough to recognize. Most of the mainstream media reports on it are just WRONG. It can look like almost any illness and has been called the new "great imitator" (Syphilis was the first). And last but not least, the testing gives so many false negatives. My son and I never tested positive on the western blot. Mine was absolutely negative across the board. He had a few relevant IND bands, and a positive Bartonella test right after onset of PANDAS, but still it took us over a year to take it seriously and start treating for Lyme and co.

 

He and I finally tested positive almost a year ago through Advanced Labs' culture test. I cried when I saw the results. I had doubted I had Lyme all along and had to get extremely sick before shelling out the money for the culture.

[mama2alex]

Rachel,

 

Coinfection testing is not completely reliable either. My son has tested negative for Babesia, but has symptoms of it and herx's badly when given medicine for it. Bartonella just came out positive the one time. In repeat testing, it has come up negative, even before the symptoms of it had disappeared.

 

Thank you so much for your post. My husband and I are keeping this in our back pocket. I have looked through my son's testing and his coinfections were negative. This testing was done through the same labs that your son had his coinfections done at. However, I do wonder about the western blot testing that was done because it wast done through Quest and some other labs, not Ignex. If my son does not improve on his current treatment plan within the next year, we have decided to request this testing through Ignex. ? My question is Do you also need to do the Lyme bands if nothing shows up on the Western Blot? My son has actually had the Western Blot done several times at different labs and it has always shown to be negative.

 

Hope you get to feeling better soon. Chronic illness is so hard to deal with physically, emotionally and finacially. Keep us posted on your treatments.

[Rachel]

I decided to go through my son's testing again. I did not realize that my son had a Lyme AB IGM CSF, and Lyme AB IGG CSF testing. The testing was done at Cambridge Biomedical . Both test were negative. I knew my son had a spinal tap when he was in the hospital but I did not realize this testing had been done. Would Lyme should up in the CSF test if it was an old infection or new infection?

[ktdommer]

Nickel mama: the diagnosis of Lyme is a mixed blessing. First relief that you finally know what you are dealing with and then the realization of what a complicated disease it is. If only it were just Lyme. I waited almost a year before testing my son. Moms online insisted but my son just didn't have the fatigue then that he did. I assumed he would have lupus diagnosed some day like me- wrongfully diagnosed.

I have learned so much a long the way. Still fighting! Dr. Horowitz's book is informative and helpful but make sure you are in the right mindset to take in all that Lyme has to offer the body. Just an amazing disease.

On a positive note, my oldest is weaning off treatment and is symptom free. I'm working full time as a teacher with chronic Lyme. A good ILADS doc got my sickest from home bound to back to school years ago.

Let me know if I can help at all.

[sf_mom]

Rachel: Spinal taps are not that reliable of a testing method for Lyme. Read below.

 

The decision to do a spinal tap on a patient with Lyme Disease is based on the physical findings. Obviously, if a patient has papilledema, they will be tapped after a CAT Scan or MRI shows no mass lesion. But in other cases, the decision to do the tap is based primarily on the need for additional diagnostic information or where there is a question as to whether the diagnosis is something other than Lyme. We have tapped about twenty-five [sic] patients so far. The majority have had normal spinal fluid findings. Usually, they have no elevation of their white cells. Protein and sugars are normal. Cultures are negative. Interestingly, however, at least fifty percent of them show increased pressure with opening pressures greater than 200, sometimes as high as 400. Every patient with papilledema has had a pressure of at least 300 or more except for one girl whose opening pressure was 260 but she had obvious papilledema and also loss of vision in her left eye. Eight of the patients had a pleocytosis with cells ranging from 60 to 700, predominantly lymphocytes. Only two patients showed a positive CSF titer.

[nicklemama]

I'm about half way through Horowitzs book. My LLMD is ILADS trained. He keeps a very low profile but he attends the meetings. He knows and has communication with many of the biggest names. His wife had Lyme and he learned how to treat Lyme and got her better. He discovered two of his three kids had Lyme. He told me he started seeing Lyme in some of his patients. Then they saw Lyme in their friends and family and soon enough, he had a Lyme only practice. Super nice guy. Came highly recommended, even from my doctor!