Lyme Disease or Vitamin D Deficiency Causing My Symptoms?

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virginialady76
Regular Member


Date Joined Sep 2008
Total Posts : 22
   Posted 1/20/2009 1:15 PM (GMT -6)   
Hi All,
 
I have been on Ceftin 500/MG 2xday for the past 4 weeks. I've also been taking 1000IU of Vitamin D3. Been feeling a lot better but I slacked off taking my Vitamin D3 pills for the past 4 to 5 days. Last night I woke up with the back of my neck sweating and the back of the head pressure pain again. When I woke up this morning, I was feeling really run down and tired like low blood sugar. I had these symptoms before and automatically thought they were Lyme related since they went away when I was on antibiotics and D3 back in Oct. 08. I never questioned if this could be a connection to the Vitamin D deficiency but I'm wondering.
 
Anyone else have symptoms related to low Vitamin D while fighting Lyme? How long should I keep staking D3 supplements or is this supposed to be a permanent thing for me since I'm deficient.
 
 
 
   

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/20/2009 1:47 PM (GMT -6)   
Vitamin D can act as an anti-inflammatory agent.

It increases the level of certain cytokines (anti-inflammatory ones) at high does- don't know if that applies to 1000 IU, but possibly.

You will likely need a maintenence dose for life once levels are good. I plan on taking it forever. There is too much evidence in it's favor and most people are chronically deficient.

Add: Vitamin D also reduces the levels of pro-inflammatory cytokines (which increase inflammation).


14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.

Post Edited (kitty9309) : 1/20/2009 11:54:51 AM (GMT-7)


judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 1/20/2009 6:01 PM (GMT -6)   
I saw you are doing Benicar and Mino, I am wondering how much Benicar are you taking? My pressure went too low on 20mg of Benicar

Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 285
   Posted 1/20/2009 6:20 PM (GMT -6)   

Just yesterday, my chiropractor asked if I was taking D3. He's very knowledgable about the biochemistry of nutrition.

I told him I was taking about 1400 iu a day and he said that was way too low. He is taking 10,000/day and one of his nurses is taking 5,000 and has seen great improvement. She's feeling healthier and lost warts which she'd had for years. I, personally, will do some reasearch before I'd take 10,000.

3 years ago an internist I saw gave me prescription D3 that I took once a week. The pill was 50,000 units. I don't remember why I quit. I don't remember that I felt better at that dose. So 10,000 a day isn't that different.

I've started at 4,000 just today.


Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 285
   Posted 1/20/2009 6:22 PM (GMT -6)   
Also, Virginialady, I wouldn't think missing 4 or 5 days of the D would be felt that quickly. But I could be wrong.

virginialady76
Regular Member


Date Joined Sep 2008
Total Posts : 22
   Posted 1/20/2009 7:00 PM (GMT -6)   
I go back to my Doctor next Monday and I will ask about these symptoms happening intermittently. I may try upping my D3 over the next couple of days to see if I feel any improvement.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4130
   Posted 1/20/2009 8:53 PM (GMT -6)   
That 50,000 dose was probably D2, which must be converted in the body to D3 before it can be used. Some people cannot convert this or convert enough of it to make a difference. So it is better to take the D3 form. And we've had 2 endocrinologists tell us that the body uses 4-6000IU of Vitamin D daily, so unless you're sunbathing in the middle of the summer or eating a ton of oily fish, supplements are a necessity.

Vitamin D enhances the ability of macrophages (part of the immune system) to kill pathogenic organisms - this is a good thing for those of us with Lyme & associated infections.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 1/20/2009 10:02 PM (GMT -6)   
Hi virginialady76.  Are you familiar with the Jarisch-Herxheimer Reaction (herx)?  I think it is possible you are herxing.  Many people herx around the fourth week of treatment. 

I am not a doctor, but to me your symptoms sound more like a herx than a Vitamin D deficiency. 
 

Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 285
   Posted 1/20/2009 10:33 PM (GMT -6)   
Thanks Razzle, I bet your're right that I was taking D2. I might call the pharmacy to find out if that's what it was..

I'm wondering if you noticed a lessening of your symptoms when you took D3 and how long did it take?

virginialady76
Regular Member


Date Joined Sep 2008
Total Posts : 22
   Posted 1/20/2009 10:34 PM (GMT -6)   
Hi ticker - Dang forgot all about herxing. I thought I was done with that. Why herx in the 4th week of treatment?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4130
   Posted 1/21/2009 1:14 AM (GMT -6)   
The life cycle of the bacteria is about 4 weeks, hence the herxing after 4 weeks...and usually the first herx is the worst one because the bacterial load is highest.

I'd love to be able to take D3 in larger amounts, but when I take more than 200IU/day, I can't sleep at all for days (I'm thinking Lyme herx, but could be wrong...). When I was taking more D3 (before I figured out the sleep connection), I didn't get as many colds & such and had more energy during the daytime.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/21/2009 12:59 PM (GMT -6)   
judy-

I take 20 mg Benicar 2x a day. My BP has not gotten too low. I was surprised and told the doctor I was afraid I wouldn't get to that dose. He said the body generally adjusts to the Benicar. I am sure that is not true for everyone, however.

I have a lot if inflammation in my body- untreated Lyme for over 14 years. My doctor gave me the results to my inflammation markers and they are high.

He feels that the inflammation is what causes symptoms with "Lyme". Benicar helps to reduce that inflammation and allow the antibiotics to penetrate better at lower doses.

TGF B1- 2x upper limit
C4a- elevated
Also, a high ratio of 1,25-D and 25 D---> inflammation
low CD57

He said these will decrease with proper treatment and resoultion of symtoms. I get the TGF B1 measured at the 3 month mark and the CD57 at 6 months. I am nearly 2 months into treatment now. Still dizzy. He said it will take time to lower the inflammation.
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.


kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 1/22/2009 9:24 AM (GMT -6)   
What is the best way to take Vit D3. if i was taking 5000 iu is better to take it in the morning and all at once or break it up during the day? Thanks,

kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 1/22/2009 6:17 PM (GMT -6)   

golfsullivan
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/12/2009 1:02 PM (GMT -6)   
kitty9309 said...
judy-

I take 20 mg Benicar 2x a day. My BP has not gotten too low. I was surprised and told the doctor I was afraid I wouldn't get to that dose. He said the body generally adjusts to the Benicar. I am sure that is not true for everyone, however.

I have a lot if inflammation in my body- untreated Lyme for over 14 years. My doctor gave me the results to my inflammation markers and they are high.

He feels that the inflammation is what causes symptoms with "Lyme". Benicar helps to reduce that inflammation and allow the antibiotics to penetrate better at lower doses.

TGF B1- 2x upper limit
C4a- elevated
Also, a high ratio of 1,25-D and 25 D---> inflammation
low CD57

He said these will decrease with proper treatment and resoultion of symtoms. I get the TGF B1 measured at the 3 month mark and the CD57 at 6 months. I am nearly 2 months into treatment now. Still dizzy. He said it will take time to lower the inflammation.


Kitty,

Do you know what laboratory did your TGFb1 and C4a? Are you a patient of Shoemaker?

Pat

alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 10/12/2009 8:55 PM (GMT -6)   
Korissa,
I am taking Vitamin D 50,000 IU right now. I looked it up and it is pure Vitamin D2.
Just figured I'd save you that call to the pharmacy:)

AdamGreg
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/20/2012 4:01 AM (GMT -6)   
Fortified Dairy products

Vitamin D isn't really a naturally sourced nutritious within standard milk. Consequently, vitamin D is certainly included. Commercially distributed milk, soya milk and also rice milk included in bottles are normally found to include vitamin D.



Cod liver fish oil

Cod liver oil has additionally been included in the listing of food resources of vitamin D. Aside from simply being a splendid supply of vitamin D, it's also seen to be loaded with different wellness improving nutritional vitamins such as vitamin A along with omega-3 efas.



Egg Yolk

Egg yolk is available in the selection of pure food supplies of vitamin D. Nevertheless, it's not a great option for individuals troubled with high cholesterol levels.



Nevertheless, uncooked fish is but one of the perfect food resources for vitamin D, preparing food appropriately prior to eating it's a good idea to protect yourself from all sorts of parasitic illness. In addition to preparing food over hot temperatures, ensure that you prevent deep frying, preferably go with baked or perhaps barbequed fish for healthy and balanced preparing food.

resource - vitaminddeficiencysymptomsguide.com

Carrie48
Veteran Member


Date Joined Mar 2010
Total Posts : 638
   Posted 9/20/2012 12:06 PM (GMT -6)   
I personally think 1000iu is too low. When my symptoms started a couple of years ago, they tested my Vit D and it was at 25. I was on super high does for a while, got it up. I've been taking 5000 iu during the summer and 7000 iu during the winter. And, I live in California! Anyhow, just got retested and my levels are at 66 so I think the levels I am taking are what work for me.

It seems like everyone I know (non lymies included) are testing low for Vitamin D...
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

gus999
New Member


Date Joined Sep 2012
Total Posts : 7
   Posted 9/20/2012 6:29 PM (GMT -6)   
There are huge misconceptions here about vitamin D. Sure people with chronic disease have low vitamin D but its the RESULT of disease NOT the cause. Vitamin D in its activated form (calcitriol) activates the vitamin d receptor (VDR) which then facilitates production of antimicrobial peptides that kill intracellular bacteria. These bacteria and some viruses have a defence mechanism of blocking the VDR or reducing the number of receptors. Once the receptor is blocked, additional vitamin D does nothing to activate the VDR. In fact the body will have already raised the level of calcitriol by converting it from calcidiol - which is the type of vitamin D that's measured by assay, to try to activate the receptor by increasing the concentration. Calcidiol falls as a result and measures low. The high levels of calcitriol cross-activate the PXR receptor which then downregulates conversion of pre-vitamin D to calcidiol. So calcidiol remains low.

When you supplement with vitamin D, both calcidiol and calcitriol will rise. Calcidiol is immunosuppressive. Your symptoms are caused by your immune system producing cytokines (chemical messengers). These cytokines will be suppressed by raised levels of calcidiol. You will feel better. But meanwhile the bacteria that have blocked the VDR will be flourishing as your immune system responds less. In the long run you make yourself worse. And for some people with very high levels of calcitriol, supplementing will make them feel worse - not better- as high levels of calcitriol are toxic and forcing calcidiol up will raise calcitriol too.
If you have Lyme you will likely have low levels of calcidiol (what is measured in most vitamin D assays) but HIGH levels of calcitriol. The last thing you need is an more vitamin D.
In fact if you remove all sources of vitamin D from your diet and avoid sunlight, you may well feel better.
You need to read MPKB.org to understand all this.
Regards gus.
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