My dad officially joined our Lymie Club

[kmom]

So this is where the movie Under Our Skin resonates in my head over and over about TBI being our next Tsunami. It really scares me.

 

So my Dad suddenly felt ill in Feb. He was very lethargic and was having vision problems--eye twitching, floaters (big ones) to the point it impaired his vision. Finally on a Sun afternoon he was so winded from climbing the steps, he went to an Urgent Care Dr. who dx'd him w/ pneumonia (did chest x-ray) and a sinus infection. The sinus infection wasn't surprising b/c he's a sinus inf kind of guy but the pneumonia was a shock b/c he wasn't even coughing so we never even thought of that as a possibility. Of course, I immediately thought to myself, "Oh no. What if it could be Lyme?!" The Dr. Rx'd a high dose of Levaquin and within days he was having herx-like symptoms so I put the bug in my parents ear that it could be Lyme. But they had explanations for every herx-like symptom. The bad knee pain was probably from the Levaquin known to cause tendonitis. He went to the eye dr and his eyes were fine so it was probably just from exhaustion. The vomitting was due to his bad digestive system which never handled abx's well. But I think once you've lived w/ Lyme in yourself and/or kids you get those "mommy instincts" even for your parents. Every bone in my body was saying he should explore Lyme. My mom too got a sinus inf and some herx-like symptoms from Zith around this time but my dad was obviously sicker.

 

3 wks go by and he's still not well. He gets an appt w/ a general practicioner and she feels the abx could have caused the knee pain. She felt his pneumonia was better but his sinus infection was still present. My mom explains our last year with Chronic Lyme just to so the dr. is aware but my dad is still in denial at this point and has no intention of seeing an LLMD or even just having a CD 57 test. The Dr. Rx's zith for the sinus inf. and says if in 2 wks things aren't better, she do another chest x-ray, run bloodwork, etc. He herxes all over again...vomitting, joint pain, major fatigue, silver starbursts in eyes. I want to fly down and shake them b/c it's screaming Lyme to me. But he's a 60 yr old man who gets to decide when or when not to investigate Lyme. As time goes by he starts to get pain by his gallbladder, chest pain and even pain on his left side of abdomen. He assumes that on top of all this he's just unlucky enough to have gallbladder disease. Luckily he started to feel the brain fog. Said he'd drag himself into work but was so foggy that he couldn't accomplish much. On a few occasions he even shut his door and slept on the couch in his office...so unlike my dad. He finally gave in and went back to GP. She suspected a diseased gallbladder. She said she was willing to run tests but Lyme was above her. My parents were coming for Easter anyway but we bumped up the trip by a few days after he got his bloodwork, chest x-ray and full abdomen scan done. He was in bad shape when he arrived. Luckily our LLMD office managed to move some appointments around and fit him in the following day...so yet another trip to MD but very worth it! (I had been warning them I'd eventually get my dad up to see him.) Chest x-ray was clear, ab scan was clear of masses and gallstones but spleen was enlarged. His CD 57 was a 20 and his platelets were a 54!!! Norm is 150-450. His lab work said ALERT! next to platelets. He was dx'd w/ Lyme/Ehrlichia, proabable Babesia and possible Bartonella. So we had a very "herxy Easter" rather than a Happy Easter! BTW, our LLMD was very happy my dad mentioned he rennovated his office building last summer thru Dec. and that mold was found. He feels the mold aggravated the Lyme AND it was important so he could start Cholystyramine to detox the heavy mold exposure.

 

So after all that, here's my main question. Is this a recent infection or probably a dormant infection that happened to pop up now. I've read that a low CD 57 score indicates the infection has been there more than a year. Looking back at my dad's poor digestive system, allergies, chronic sinus problems and so on, he could be the poster child for Chronic Lyme. But ironically my father laid sod in their front lawn in FL 4 days before his pneumonia/sinus symptoms hit. I have read Ehrlichia symptoms appear 3-16 days after a tick bite. He doesn't ever remember a tick bit after sodding or any other time in his life. If I look at family history, I'd be willing to bet there's congenital Lyme and then maybe a fresh bite??? Or just the mold that brought it out. I could make myself crazy trying to figure it out. I always have to remind myself to let that go and focus on what we do know now. But you can't help but wonder why. In the meantime, I got my mom a CD 57 test and labs done b/c she's on her 3rd abx for sinusitus since Feb. and has some Lyme-like symptoms Huh, wonder how many times the word Lyme goes thru my head in 1 day!

[MichaelTampa]

I'd say likely he had some level of infection a good long while. Something made finally get a lot worse. Could be the process of removing mold stirred things up and gave him increased mold exposure which did it. Perhaps during the sodding if that was lots of extra work he's not used to doing, or got bit by tick and/or several mosquitoes during the work. A lot of things like that can push it over the edge.

[momaine]

I'm so happy when I read that someone has been pushed to test for lyme and finally finds out what is wrong. I hope to get my older dd tested, but she's in denial and my hands are so full I can't imagine physically dragging her at this point.

 

We also had a Herxy Easter. Dd was struggling so badly that we stopped antibiotics for a day and a half. (which helped but Dr. J said don't make a habit of it.) I feel like she just can't detox fast enough. We do 10 charcoal, glutathione, Inositol, Alka Seltzer Gold, Epsom salt showers, etc. Dr. J suggested we get a psychiatrist on board. She is on 20 mg Celexa and we just raised it to 40 hoping to get some relief. Maybe it'll help. Thinking about the psychiatist, but really hoping that she turns a corner soon. Dr. J said she must have a high spirochetal load.

 

I also had a shitty herx on Easter(restarted Augmentin that day) I had a fever and was so cold and could not get warm. My body just started crying and shivering....its not like I wanted to cry, but I think it helped me to warm up. It was weird. That has happened twice. I just started bawling and couldn't stop and I was so cold.

 

Heading to CT Tuesday to see Dr. J and Wed. Thurs. to do IVIG with DR. B. Lots of questions this time. Hoping for a miracle.

[Familyof5]

Mold exposure can cause all of those symptoms you mentioned. Since you say your mother is also ill, consider mold in the environment as a cause. Mold and lyme symptoms are so similar, it is hard to tell the difference in diagnosis. The cholestyramine should help with symptoms, but he should also be checked for MARCONS (nasal swab needed for test). Clearing this out is a critical step in healing. Since the mold was in his environment, he may have been suffering from long term chronic mold exosposure. Removing it may have caused a massive exposure which tipped the cart. There are also many molds and chemicals in fertilizers which could also cause a reaction in someone predisposed and/or already sensitized.

[Suzan]

My chronic lyme was triggered by heavy stress and fear and then it was a quick and bad progression. I believe in retrospect that I had it from a young age. I don't know much about mold so I can't comment there but it sounds like chronic based on my experience.

 

So glad he is getting some help! That is scary. I would look into mold too to be sure he has his bases covered.

 

 

Susan

[kmom]

Thank you ALL so much for the advice. It was helpful. And since I find so much wisdom on this forum, I'm going to kindly as for some more. We got some more blood work results back today on my dad. So we knew from the 1st set of labs that he had LOW platelets, slightly enlarged spleen, CD 57 was 20, and suspected gallballder malfunction (no stones but going for a different scan to check functionality next week b/c he's still having major digestion, gas and still vomitting here and there.) We are so confused by the vomitting he had Monday and again today. The LLMD seems to think he shouldn't be but I thought it could be a sign of herxing. So now the latest results show elevated liver levels. The LLMD is concerned and wants him to see a hematologist to rule out Leukemia and Lymphosarcoma. Here are his levels:

 

Bilirubin, Total--1.3 Normal--0.2-1.2mg/dL

 

Alkaline Phosphatase--286 norm 40-115 U/L

 

AST--203 norm 10-35 U/L

 

ALT--111 norm 9-60 U/L

 

I have read that some people were misdiagnosed w/ the cancers mentioned above when it was actually Ehrlichiosis. But I have also read that untreated Ehrlichiosis has led to those cancers. Stinks we got the news close to 5pm on a Fri. What a long weekend.

 

@Momaine--sorry to hear about your Easter. Wishing you all improved health!

 

@Family of 5--ever hear of this liver enzyme mess w/ the mold toxicity? Just wondering. Also, went to Dr. Shoemaker's website and it was so interesting. Thanks!