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Envita for Treatment? Not sure if I really have Lyme....please help

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Posted 12/6/2010 11:51 PM (GMT 0)
Hi my husband has been fighting something since 2007 and has been to 4 rheumys including Mayo clinic, infectious disease dr, endroconologist, neurologist, 2 lyme Dr's one being at Envita.  There protocol is very intense and not sure if this is the correct choice for him.  Was hoping others have been treated there and hoping to find out how it worked for them and if you recall the protocol they used for you? Or if anyone has any advice on what treatment did work for them that would be great.

He has to many symptoms to list so I will list the ones that bother him the most:

Tingling (entire body at times)

Joint Pain (hands, wrists, elbows, shoulders, hips, knees, ankles, feet)

Joint burning (feels like someone is dropping acid in his joints)

Major fatigue

rib pain

muscle twitching

stiff neck

eye problems

gets chills on and off

heat sensativity

when he gets hot his entire back gets a rash on it, sometimes he gets red rash on each side of his nose

Does anyone else with Lyme have these symptoms?

His labwork results:

IGeneX IgM  -  positive

23-25  ++

31       ++

39       IND

41       +

83-93  +

IGeneX IgG  -  negative

31      IND

41      +

58      +

66      +

The only Dr. that says the western blot is positive is the 2 lyme dr's, have spoken with infectious disease doc and he says it is negative.  And according to what I have read and what the Lyme docs said unless the dr is knowladgable in Lyme they will say you do not have Lyme.  This is so hard for Lyme patients and it is hard to make an educated decision when eveything you hear or read is contradicting....please help!!

Labcorp

HNK1 (CD57)+

3%

54      Low      range 60-360

Genova Diagnostics

HHV6, IgG                                                                1:320   positive    range <==1:20

EBV Nuclear Antigen, EBNA IgG (serum)                  4.82    positive    range  <==0.90

EBV, Nuclear Antigen, EBNA IgM (Serum)                 1.18    positve     range  <==0.90

EBV Early Antigen-Diffuse, EBEA-D IgG (serum)        3.38    positive    range  <==0.90

EBV Viral Capsid Antigen, VCA IgG (serum)              7.21    positive    range  <==0.90

EBV , VCA IgM (serum)                                             0.18    negative   range  <==0.90

CMV, IgG (serum)                                                     5.80    positive    range   <==0.90

CMV, IgM (serum)                                                     0.86    negative   range   <==0.90

We are not sure if any of this other than the western blot points to Lyme, so any input anyone has would be greatly appreciated!!

My husband has had the million dollar work up as I am sure many of you have had as well. The only other thing that has come back positive on his testing is a POSITIVE ds/DNA.....I know this is marker for Lupus, however it does not mean you have Lupus.  We are going to another Rheumy in Dec to rule this out as the other 4 Rheumys have not said Lupus.  He has been diagnosed with Fibro however and we do not believe it is fibro, think they did it cause they do not know what it is.

Also have a question about diet with Lyme Envita wants him to remove all dairy, sugar, eat only organic meats, eggs etc not sure what the purpose of this is??

Thanks for any help/advice you can give.

cookiemoster1

Posted 12/7/2010 2:00 AM (GMT 0)
Hi cookie Monster!!
Welcome to our forum!! What a wonderful wife you are to be willing to do some digging like this for your hubby!! I am really sorry that your hubby is going through all of this!! I think you will find us to be a caring, helpful & understanding group!!

LD is one of those illnesses that doesn't come with a one-size-fits-most treatment. I started out on abx, they didn't do so well with me & now I am seeing an Acupuncture Doctor & using the herbal route for my healing.

Once Lyme Disease invades the body, it strikes the weakest point in each body, and it's not usually the only tick-borne infections that a person gets - they are known as co-infections - Babesia, Bartonella, & others that I won't even try to spell tonight!!

I am in no way medically trained (but am fairly well self educated on some of this), but according to what you posted about the results of his blood tests is that he is positive for LD, as well as EBV (Epstein Barr Virus), HHV6 & a CMV infection.
A surprising amount of Lymies have tested positive to these things as well.

It's kind of a which came first - the chicken or the egg? question as to whether a person catches some viral infection & that's what makes them more susceptible to Lyme or if it was the Lyme that came first.

Which ever doc told you that unless the doc knew about Lyme, you would be told that you don't have Lyme - they were right, unfortunately. Lyme Disease is a huge political issue. There is a lot of arguing going on about every aspect of this disease!

Two things that I would heavily suggest that you & hubby read is the thread at the top of this forum titled "New to Lyme?...Start here" as that is packed full of useful information that we, the patients, feel is important to know right away.

The second thing I would heavily suggest you read is Dr. Joseph Burrascano's paper "Advanced Topics in Lyme Disease". He is a very well respected LLMD (Lyme Literate Medical Doctor) by his peers & this paper is packed full of all kinds of info about Lyme & co-infections! You can download a copy here;
www.lyme-disease-research-database.com/lyme_disease_blog_files/burrascano-treatment.html

There are quite a few docs that want their patients on some type of specialized diet. Dairy, wheat & sugar can "feed" tick-borne infections and can promote inflammation in the body. Eating "Organic" keeps some harmful chemicals from entering our bodies though our food.

I do hope this helps some!
May you find peace along your journey to health!
Trav
Posted 12/7/2010 2:14 PM (GMT 0)

Hi cookie Monster,

Welcome!

My symptoms specifically from your list:

Tingling in different parts of  my body at different times-- pin-prick sensations too, all over the place. 

Joint Pain (elbows, shoulders,  ankle)

Joint burning (for me it's more like nerve pain-- in elbows, neck and shoulder) 

fatigue (not debilitating-- just need naps during the day) 

muscle twitching-- everywhere

stiff neck-- was very severe and included my shoulder and upper back.

chills on and off

heat sensitivity

 

I had/have many more symptoms than you mention....and....the tingling/pin-prick sensations and chills didn't begin until I started taking Doxycycline because Lyme was suspected. It was like the Doxy brought those two symptoms out.  Chills have gone away now...pin pricks are lessening.

I am awaiting results from a new blood test-- my first was 'indeterminant'. 

 New results should be in this week. So I'm very curious.

In the meantime I have been diganosed with Thoracic Outlet Syndrome as a cause for my neck/shoulder/ back pain.....but not Fibro....yet....and I doubt that anyway.  

Great that you are persistent.... and certainly a wonderful advocate for your husband's health! 

 Traveler, as always, is a wealth of info!  

Posted 12/7/2010 5:11 PM (GMT 0)
Traveler & Cat111,

Thank you so much for your input!! I have a print out of LLMD Joseph B already and there is a ton of great info in it....thanks for the link.  And I agree there is a ton of contravercy re Lyme....that is why I am here I guess.

It just makes it hard to know where to go and what to do for treatment when noone seems to agree.  We have become our own advocate and I have gotten to where I don't trust any Dr anymore....it sucks and it is sad that is has to be this way confused   I have suspected it to be Lyme or even heavy metal toxicity long before we saw the Lyme docs.  But it seems all the Rheumys we have seen just want to throw medicine at him yet they don't know what is wrong.  Not a fan of taking meds when we don't know what we are treating.  I have googled and googled trying to find an answer but now I am more confused that Lyme has actually been mentioned by a Dr, I mean I suspected it but did not realize all the contraversy that comes with it.  Anyway that is enough of my mild vent.

I forgot to mention his older brother came down with the same symptoms about 2 years prior to my hubby.  The ER said he was having a panic attack which is what my hubby was told as well.  He has since been told he has beginning stage RA.  He is on Plaquanill (forgive my spelling) One of the Lyme docs we saw said Plaquanill can acctually help Lyme to a degree do you know if this is true?  Cause he does feel better at times.

What is your history Traveler....if you don't mind me asking and how are you doing today....how is ancupunture working?

Cat111 keep us posted on your test results

Thanks again!!

 

Posted 12/7/2010 6:17 PM (GMT 0)
Oh I forgot to ask you from what I have read Lyme runs in cycles and it says about every 4 weeks it will flare because the bug doubles?  He has felt really bad for at least 4 weeks, where usually he seems to get worse ever 3 - 4 weeks.  However he was running on treadmill 4 days a week and weight training 2 days a week when he would feel a little better.  He did a really hard run about a month ago and it seemed to nock him down.  He started exercising again yesterday.  Does exercise tend to help Lyme?  And does it make sense to feel so terrible for so long? 

Also I forgot to mention in 2007 he started taking testosterone and this increased his tingling by at least 10.  From what I have read on that, you should not be given any steroid with Lyme because it can cause perm damage. 

I do know you are not a Dr., but I value the opinion of all you who are also trying to beat Lyme.

Has anyone taken any suppliments that have helped them to feel better, I know they will not kill the Lyme but hoping there is something that might give him some relieve until we make a decision on what route we are going to take in attacking the Lyme. Thanks

I feel so helpless and I just want my hubby to feel better.

God Bless

Posted 12/7/2010 6:29 PM (GMT 0)
Please look at the marshall protocol..

i think the website is www.marshallprotocol.com

and the organization non profit for lyme is www.immuneresearch.com

 

Posted 12/7/2010 7:10 PM (GMT 0)
I am right in the middle of week four of being on Doxy. I actually feel pretty good-- considering how horrible I used to feel. So I'm not experiencing the week four 'worsening of symptoms'.

Mind you...this is week four on abx.....not week four after being bitten by an infected tick. I don't know which tick/ticks could have infected me or even when!

I pulled at least 10 ticks off myself this summer, and additional ticks this fall. So who knows. And that's only this year!

As far as supplements go....I just take my regular B vit. , fish oil, etc.....which I can't say actively make me feel better as I have been taking them for years. I do eat organic and eat well in general, so again....status quo.

I try to exercise at least 4 days a week....harder to do now that it's freezing cold here in the NE....but I do believe exercise is just great in general. Specifically for Lyme? No idea!
Posted 12/7/2010 8:09 PM (GMT 0)
First, please excuse me, but I need to have short paragraphs, as I have Neuro LD & it has affected my eyes making it hard to not get "lost" in long paragraphs.

My history with tick-borne infections is quite long & sordid. In a nutshell - I'm very much an outdoor person, so I have been bit by soooo many bugs!! A whole lot of ticks as well.

I was infected with RMSF when I was about 5 yrs old & have been infected with LD & the other co-infections for an unknown amount of time. Just this past year I tested positive - again eyes - for Lyme & RMSF, and not one tick was on me for more than 2 hours!!

On to more important stuff -Lyme doesn't actually double every four weeks - it has three life cycles - spirochetal (sp?), L form & cyst form. It cycles through these forms about every four weeks.

Most LLMD's want to 'catch' these little buggers in the stage where they are most likely to be vunerable to the abx-type treatment, the spirochetal stage.

Exercise is a very good thing for those with LD, only be careful - it can be pretty easy for someone with LD to over-do & then pay for it pretty hard. Easy, steady exercising would be best.

I'm really sorry to have to say this, but you're right about the steroids. They cause the LD to disseminate - spread deeper into tissues, organs, joints. You might want to reevaluate his need for them.

There are circumstances where someone with LD should stay on steroids, but I would think that it would be best for that person to try to stay on the lowest dose possible for their condition.

As far as supplements go, it really depends on what are his bodies weak points. I have malabsorption issues, so I am trying to find the right balance of supplements that my body will actually absorb & use.

You can download the pdf version of Dr Burrascano's "Nutritional Supplements in Disseminated Lyme Disease here;

www.pdfgeni.org/fd/nutritional-supplements--lyme-disease--burrascano-pdf.html

Although there are a few things most Lymies usually need -a good probiotic, a good multi-vitamin & mineral supplement, vit. B-12. A lot of us benefit from adding a magnesium supplement and I would suggest the use of Omega 3 & Omega 6 oils.

Different LLMD's will have their own combo of supplements that they want their patients on, but these are the one that I have seen the most people taking & for the most part is what I take.

As Cat said, eating organics whenever possible is a really good idea as well.

I do hope this is of some help to you...
Trav
Posted 12/9/2010 7:41 PM (GMT 0)
i just realized that almost all the symptoms of lyme coincide with opiate withdrawal as well. this concerns me because i have recently been prescribed vicoprofen prn and I do not want to experience withdrawal on TOP of my lyme symptoms. The symptoms that are analagous are:

sweating
chills
muscle spasms
fatigue
twitching
and increased pain throughout


Am I just going to make my experience with Lyme worse by promoting opiate withdrawal in between vicoprofen doses? I have been prescribed opiates in the past and developed a tolerance so I'm scared I will start to withdrawal faster than a normal person. Should I talk to my doctor about seeing a pain specialist? I don't know what to do. I'm tired of experiencing the horrible lyme symptoms on a day to day basis but I don't want to experience the roller-coaster ride of ups and downs the opiates give you. Any advice?

skull
Posted 12/10/2010 5:52 PM (GMT 0)
Hi dcraver,
Actually you are the only one who can truly tell if opioids are necessary. I have cycles of pain where the only thing that even comes close to helping are the opioids, but for the most part I use other meds to help with the lower levels of pain - until I hit one of my pain cycles anyway!

These are a few things that can be taken to help with the pain that Lymies can experience -which has been compared to the pain of a post-surgery patient; Magnesium Oxide, Gabapentin (Neurontin), Naproxen, and even plain ole aspirin. I know this is far from a complete list, as what works for one person, may have absolutely no affect on another person's pain.

BUT - if you feel like you are experiencing withdrawals, or feel like you are actually addicted to prescription pain killers, then you really need to seek out professional help.

Please get this straightened out asap - as an addiction would not be doing your body any favors - it's already doing all it can to fight the tick-borne infections.

Please let us know what you decided & how things go!!!!
I do hope this helps a bit.
Posted 12/11/2010 6:44 AM (GMT 0)
hey cookie monster, I have been treated with their protocol and know couple of others so if you want whole scoop you can email me anytime.
Posted 1/1/2011 2:37 AM (GMT 0)
what happened to cookie monster?
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