T Nation

Lymes Disease


#1

Hi all,

Wasn't sure where to post this and debated having it in the Injury and Rehab section but in my searches, I noticed a lot of Lymes discussion here.

I need some serious advice on Lymes and where to go. Who all out there as had a scare, or had it and your dx process and recovery. I am in rough shape w/ muscle weakness. I've had MRI of spine and brain come back normal. Normal blood work and cleared by a neurologist and diagnosed w/ stress and anxiety. I've been on Paxil for 5 weeks now and strength has not returned. It's been over 3 months now w/ the weakness. To be more specific, the weakness is in my quads, shoulders, biceps and index and thumb fingers. Also loss of grip strength.

My full story is currently near the top of the Bigger, Stronger, Leaner section but I am now scared of Lymes disease. My PCP highly doubts it's Lymes being up here in Michigan but I'm not convinced and these symptoms are getting very difficult for a 33 year old with a wife, 2 kids and corporate career. Training/fitness and basketball are my hobbies and haven't been able to do anything for 3 months.

Please help!


#2

Risk map 2015: https://www.michigan.gov/emergingdiseases/0,1607,7-186-25890_26143-95445--,00.html

This forum is male hormone related and a few here have some Lyme history.

Lyme is a difficult disease from the perspective of diagnosis and treatment.

What we deal with can be seen in these stickies:
- advice for new guys
- things that damage your hormones

You need to look at may aspects of your health. This includes thyroid and vitamin-D status.


#3

Thanks for replying KSman.

My thyroid has also been ruled out. How do I look into vitamin D? I'm looking to hear other people's experiences with being diagnosed and treatment.

Thanks for the risk map. I live in Livingston which appears to be safe but I have spent some time in Grand Traverse which is highlighted red. And actually, the weakness began maybe 4-6 weeks after being there a couple days. However, I did not spend any time near any woods, mainly the city and beaches. I never had any rash, flu-like symptoms or anything else. Only the weakness.

When it began, it wasn't so bad, definitely noticeable in the gym and doing daily tasks. I then googled my symptoms and everything came back ALS, muscular dystrophy, MS and I freaked myself out pretty bad. Symptoms immediately got worse over the next few days. Because of this, my PCP and neurologist said stress and anxiety. Still wasn't convinced and demanded more bloodwork and MRIs and everything continues to come back normal. I finally started to believe it was stress and anxiety, began seeing a behavioral therapist and started feeling better mentally. I still have sleep issues however.

Symptoms have not subsided so I began internet searching again and as I previously mentioned, I have been "disease hopping"...now stuck on Lymes. Been scouring and researching this disease and now I've convinced myself I have it. Again, Drs won't believe me and even my wife thinks I'm crazy and have developed some kind of health anxiety making me worse. This week is the worse I've felt and I feel like I'm starting to imagine all the other Lymes symptoms. Not sure what's real or made up in my head anymore...


#4

I would go to the ILADS website and find a Lyme literate doctor in your area. It is essential that you work with a doctor who specializes in Lyme. You want to test for Lyme and the co-infections to see if this is what you have. Lyme is a devastating systemic disease that can reak havoc with just about every system in your body. I have personally had, and dealt with Lyme for over 12 years and it is not anything to take lightly. GET TESTED. If you need help or advice in the future you are always welcome to contact me.


#5

Thank you.

What were your symptoms and how was your recovery? Are you better now?


#6

"My thyroid has also been ruled out."
Most doctors are clueless. Can you post your labs with ranges?
Have you always used iodized salt?
Feeling colder lately?

So you were negative on Lyme Disease anti-body lab work?
You could ask to run the antibiotics, relatively harmless.


#7

I will try to post my lab work tonight when I get home. I have iodized salt at home and use it on most foods. I wouldn't say I feel especially cold. My temp is usually okay, I think.

I haven't taken any blood test specifically for Lymes yet. But I plan to next week when I see my PCP again. He has told me that the test they do for Lymes is the elisa (sp?). What type of blood work would you recommend for other infections? I'm determined to get to the bottom of this and I truly pray it's not Lymes.

I miss training, holding my daughter and doing the easiest of tasks. This all happened after a very stressful time at work where I wasn't able to train due to workload. Diet and sleep went to shit. This is where Drs are insistent on stress and anxiety. I'm just not so sure. I know my body and the way it functions.


#8

CBC labwork can show signs of infections.

Packaging of iodized salt and non-iodized is very similar.


#9

Thank you. I will definitely ask for that. Is that common lingo for a PCP where if I ask for CBC work to be done he will know what to do? Also, will this have any indicator of Lymes or other co-infections of Lymes?

Sorry for so many questions, blood work is not really in my wheelhouse.

Any others out there w/ experience w/ Lymes or any of the other weakness/neurological issues I'm experiencing?

Thanks again all.


#10

CBC is compete blood count, very basic, you probably have that done already.
See my addition to my last post re salt.


#11

See below for my blood work. Is this what you're referring to as CBC? This was taken back on 8/27...maybe a week after I started experiencing my muscle weakness and I saw my PCP.

I was mistaken in my earlier post regarding what kind of blood test my PCP offered to give me for Lymes...it is not the Elisa. I came home to look at my notes and he said he would do a Lipid Panel & Lyme Antibodies (AB Screen). Any familiarity w/ this and is it accurate?

Also, the salt I have/use at home does not contain iodide. Should I look into iodide salt and what are the benefits here? What else could help me feel better? I currently take a multi vitamin as well as magnesium. And the paxil which I mentioned before which I was prescribed for the stress/anxiety. I'm in week 5 of paxil where doctors said it would take up to 5-6 weeks to start kicking in...no idea if it's working or not. I do have some pretty gnarly anxiety though...it was always with work however...work has calmed down and it's strictly health anxiety now.

Is Lymes the only probability here? Is there any possibility this really all could be due to stress and anxiety?

FREE T4
FT4 - Result : 1.16 Range : 0.61-1.85
FERRITIN
FER - Result : 170 Range : 24-336
C-REACTIVE PROTEIN
CRP - Result : 0.5 Range : -<0.5
Vitamin B12
B12 - Result : 706 Range : >180
FOLATE-SERUM
FOL - Result : 13.40 Range : >5.90
URINALYSIS (micro by rule)
U*RBC - Result : 0 Range : 0-3
U*WBC - Result : 1 Range : 0-2
URINALYSS (macro w/ rules)
U APPEAR - Result : CLEAR Range : CLEAR
U BILI - Result : NEGATIVE Range : NEGATIVE
U COLOR - Result : YELLOW Range : YELLOW
U GLU - Result : NEGATIVE Range : NEGATIVE
U KET - Result : TRACE Range : NEGATIVE
U PH - Result : 6.0 Range :4.8-8.0
U SP - Resut : GRAV Range : 1.019 1.005-1.030
U UROBILN - Result : NORMAL Range : 0.2-2.0
U*BLD - Result : NEGATIVE Range : NEGATIVE
U*LEUK EST - Result : NEGATIVE Range : NEGATIVE
U*NIT - Result : NEGATIVE Range : NEGATIVE
U*PROT - Result : NEGATIVE Range : NEGATIVE
TSH
TSH - Result : 2.25 Range : 0.34-3.00
COMP METABOLIC PANEL
ALB - Result : 4.5 Range : 3.2-4.8
AP - Result : 62 Range : 27-120
BILIT - Result : 0.4 Range : 0.0-1.6
BUN - Result : 22 Range : 6-23
CAL - Result : 9.1 Range : 8.5-10.1
CD - Result : 29 Range : 20-30
CHL - Result : 102 Range : 98-112
CREAT - Result : 1.02 Range : 0.64-1.27
GFRBM - Result : 102 Range : >60
GFROM - Result : 85 Range : >60
GLU - Result : 86 Range : 60-100
GOT - Result : 28 Range : 15-41
GPT - Result : 40 Range : 10-63
POT - Result : 3.9 Range : 3.5-5.3
PRO - Result : 7.5 Range : 6.1-7.9
SOD - Result : 139 Range : 135-144
CREATINE KINASE (CK) TOTAL
CK - Result : 308 Range : 50-280
AUTO 5-PART DIFF (w/ABSOLUTES)
BASO # - Result : 0.1 Range : 0.0-0.2
EOS # - Result : 0.1 Range : 0.0-0.7
LYM # - Result : 2.8 Range : 0.8-5.0
MONO # - Result : 0.6 Range : 0.0-0.8
PMN # - Result : 5.7 Range : 1.7-7.6
CBCD COMPONENT
HCT - Result : 49.8 Range : 41.0-53.0
HGB - Result : 16.7 Range : 13.5-17.5
MCHC - Result : 33.5 Range : 32.0-36.0
MCV - Result : 88 Range : 82-100
PLT - Result : 196 Range : 140-450
RBC - Result : 5.63 Range : 4.60-6.20
RDW - Result : 11.9 Range : 11.0-14.0
WBC - Result : 9.3 Range : 4.0-10.0


#12

My symptoms included extreme weakness, joint pain, fatigue, anxiety, dizziness, weight loss, endocrine problems (adrenal and thyroid dysfunction)., headaches, ect. I continue to battle with Lyme and the confection because i have been reinfection multiple times as I was a logger for over 35 years. As far as testing goes you need to have them run through Igenix Lab in California. Do not trust the standard western blot test (to many false negatives). Also remember that less than 25% of positive Lyme cases get the so called bullseye rash. Again I urge you to get the proper testing.


#13

Thanks Rico. I have extreme weakness in my quads, shoulders, videos and down to my hands. Shower/shaving is difficult. I have no loss of appetite, no headaches, no joint pain. Did all the symptoms hit you at once? When you say endocrine and adrenal/thyroid dysfunction, can you give w little more detail?

Also, I have good days and bad days. I seem to have my good days on Saturdays and Sunday's. This is where my Drs seem convinced it's stress and anxiety. I'm married now w/ 2 daughters. But I recently found out my ex college girlfriend has Lymes and its freaked me out even more (this was over 10 years ago).

How can I go about Igenix testing? What are the costs and does insurance cover anything?


#14

FT4 - Result : 1.16 Range : 0.61-1.85
TSH - Result : 2.25 Range : 0.34-3.00

You are not using iodized salt.
Others in your home also affected.
Does your vitamin list iodine and selenium?
Men should not have iron in their vitamins.

Thyroid lab ranges are misleading.
TSH should be closer to 1.0, 2.25 is too high. Can be direct result of iodine deficiency
T3, fT3, T4 fT3, should be near mid range or a bit higher [optimal].
fT4=1.23 would be midrange, 1.16 is low.

Please evaluate your overall thyroid function by checking oral body temperatures:
- when you first wake up, should be 97.7-97.8, higher is OK, 97.3 is a problem
- also check for 98.6 mid afternoon

Please read the thyroid basics sticky.
Iodine is needed to make thyroid hormones.
It has been added to salt for almost 100 years and for good reason, but non-iodized salt is right there on the shelf and many like your self do not know the issues and doctors never ask. Low thyroid function can rob your energy and make you cold and depressed. Makes you vulnerable when you get sick, as every part of your body is not working right.

You do have CBC results in your lab work.

These may be indicating [trace] effect of an infection
CRP - Result : 0.5 Range : -<0.5
U*WBC - Result : 1 Range : 0-2
WBC - Result : 9.3 Range : 4.0-10.0

In your climate, you are probably have low levels of vit-D3, whole family. And if you do not drink much milk...
Find tiny 5,000iu oil based Vit-D3 capsules. They are cheap. You could test Vit-D25 later on and you want to be around 60 on that lab result.

Is your thyroid enlarged, sore, lumpy or asymmetrical?

Make sure that wife and baby are getting these nutrients.

Get non-iodized salt out of the house.


#15

As far as the adrenal thyroid dysfunction, I had anxiety, low body temp, fatigue, loss of strength, digestion issues, ect. You should get a 24 hour saliva test done to see how your adrenals are functioning, and a blood thyroid panel (including reverse t3). Both Lyme and stress can destroy your hormones. I should also tell you that it has been proven that Lyme can be sexually transmitted (your ex), and also passed from mother to fetus. Scary stuff. 99% of PCP Docs are going to be worthless when it comes to treating Lyme. You will need and expert (Lyme literate doctor) if you test positive for Lyme. As far as testing with Igenix, I pretty sure you will need a doctor to order the blood work. You will also need a knowledgable Doc to interpret the test results.


#16

KSman, thank you for your knowledge. I will definitely read the stickies and check my temperature as you suggested. When you say some of my blood could indicate infection, does that include Lymes? And dumb question, how do I check if my thyroid is sore, lumpy, etc.?

What's your experience on stress bringing my type of symptoms? Could this really be? Any experience with chronic fatigue syndrome or adrenal fatigue? This past spring and into summer my job/project became very intense and stressful - this turned into my drinking most nights, not training, shit diet, sleeping pills at night..all to fall asleep. Then In the morning I would be in office early, drink a pot of coffee, 5 hr energy shots/Monster drinks, pre-workout supps during the day at my desk for an extra kick! This is where my neuro and dr said my hormones could be all out of whack and this is simply stress. The anxiety and insomnia were already there for these stressful months where I was working 7 days a week/80 hours a week. The weakness began when I was back in the gym and eating right again. The weakness was there but wasn't horrible until I googled my symptoms and thought I was dying. This is when the twitching, weakness, insomnia immediately got worse.

Again, as I mentioned. I tend to be stronger on weekends and some days I feel full strength. Maybe it's coincidence it's always Saturday and Sunday. Another oddity, there's been a few Friday/Saturday nights where I've been with friends and drank more than usual. The next day I for some reason feel strong. This is where my wife tells me, "see, you're hungover and not thinking about work and your health! It's all in your head." I start to believe that then comes the work week and I feel completely miserable again. Very weird.

Rico, thank you. Do LLMDs and Igenix take insurance? How much out of pocket do I need to plan to spend? How do I go about taking a saliva test? How long does it take to get results back?

Sorry for so many questions guys...I need to feel better and get my life back.


#17

What you describe could be adrenal fatigue. Your stress levels combined with drinking alcohol, lots of coffee and a bad diet and sleep could definitely cause a severe crash. Find a good naturopathic doctor who can test and help with your endocrine system. There can be a lot of symptom overlap with many of these diseases. Thats why proper testing is a must.


#18

Thanks Rico. I've thought about adrenal fatigue before and asked my neuro about it. She laughed and said if I had adrenal fatigue, I would have fallen over in the gym (when I saw her the first time, I had only been out of the gym for 2 weeks). I don't know much about adrenal fatigue; not sure if she does either. Is there a diagnosis for AF and any kind of testing?

Update today : so perfect example of what I was mentioning in my post yesterday. I'm coming off possibly the worst week I've felt symptom-wise. Had my family over last night (big family and alcohol and heavy drinking is NOT frowned upon), ha! I drank quite a bit and obviously slept with no interruptions or waking up like I usually do. Today I feel absolutely great! No weakness at all! There's clearly a pattern here - it's either the fact it's the weekend or alcohol has an effect.

So weird. So many questions...


#19

And here we go: it's Monday, back to work and feel like complete shit w/ this weakness. After a weekend of feeling strong, being able to pick up my 35 lb daughter and going up stairs w/ ease I'm right back to being weak as hell. What the hell is this?

Could this be Lymes or adrenal fatigue?

Anyone out there w/ a similar story? Also, looking for more experiences w Lymes. I see my PCP again on Wedsnesday. Not even sure what to ask for anymore. I need to somehow look into this Igenix testing or even seeing a naturopath.

Please help.


#20

Get Wilson's "Adrenal Fatigue" book and read it.

TSH is elevated, fT4 is low and fT3 has not been tested.

Adrenal fatigue typically has elevated rT3 that blocks fT3. Body temps can be low from low fT3 or adequate fT3 that is been blocked by rT3.

I do not understand why you are ignoring iodine and iodized salt issues. And you need selenium too. Get back to the thyroid basics sticky.
You may have multiple issues.
You were abusing you body and adrenal fatigue is a real possibility.
I do not have much experience with Lyme. It can be a difficult thing to [mis]diagnose. You need the specific lab tests.

Please review the points in my posts above. You seem to be self-guided in directions that miss different destinations.