posted
My husband�s health and condition has deteriorated dramatically since February of this year. At first he only had mild double vision many months before his dramatic decline. Then in January he started getting fatigued.
His walk was uneven in February and the double vision got worse. March was a very bad month. By this time he�d lost a lot of weight and became much too thin.
All of his symptoms � double vision, tinnitus, fatigue, slurred speech and loss of balance became more pronounced at an alarming rate!
Now it�s May and he needs a walker for stability, has no energy at all and feels sick all of the time. If he continues at this rate I fear he won�t be around by summer!
He�s seen many doctors and we have more appointments for others. Unfortunately the wait is so long to see one of the top LLMDs. When one is so sick it's very hard to wait!!
So far his blood tests indicate that he has had or has Lyme. (we get more test results this week).
We do have an LLMD who is holistic and is available for my husband to talk to when he needs to. This Dr. believes that he does have a tick borne infection of some kind and we get the results back from Igenx hopefully soon.
Since it�s only been 1 � weeks since he first saw this LLMD, he�s been given lots vitamins (He has very low vitamin D & B) and B12 shots among some others. I don�t have the list of everything.
He�s also taken oral antibiotics several times and it seems that each time it makes him very sick feeling. He does want to do IV antibiotics but is afraid of the reaction (herx?) he might get if he feels so ill just on orals.
Yet with all of his disability, he has no fever, no headaches, no brain fog, no joint pain or pain of any kind so he�s questioning if this is Lyme.
I did think of ALS but his muscles are still strong and we did see a neurologist (not an LLMD) who didn't think it was ALS.
He did have Lyme 7 years ago with a swollen knee and after a course of antibiotics he got better and never had any more symptoms until recently.
Has anyone else gotten very disabled quickly without pain? It seems that almost everyone that I read about has some sort of pain but many look �normal�. My husband does not look OK. His appearance is shocking!
He hasn't been into work since February and the only time he leaves the house is to go to a Dr.'s appointment.
It�s hard to believe that he�s the same man that renovated our kitchen last year!!
I am so scared!! Every night I sit in our basement trying to seek some answers online and end up crying and worrying so much.
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
One thing I would wonder about due to the weight loss is the possibility of celiac disease. I know there can be significant weight loss as well as vision and balance problems as well. He very well could have lyme, but there is also the possibility if him having something else instead. I did come across this link, and was surprised how much the symptoms can mimic lyme. http://surefoodsliving.com/celiac-disease/symptoms/
I would call daily to check for cancellations. I did and eventually I lucked out. I know it can be very scary and frustrating when a loved one is ill.
Posts: 1750 | From United States | Registered: Dec 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Please.
If he has had Lyme before and we all know how difficult it is to treat and confirm remission, then most likely his current symptoms are Lyme related.
Talk to your LLMD and convey your desperation ask them if someone cancels (and they always do) that you can make it there right away. �That is what I did and a 3 month wait period turned into only 4 days, with a LLMD that is highly sought after.
Alternatively, I can give you information of a LLMD (in NY) that will see him next day and can begin treatment in about two weeks based upon symptoms. �It takes about 2 weeks for the test results to come back, and he can start treatment then. �Who knows, maybe even sooner.
Posts: 2094 | From NY | Registered: Oct 2011
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posted
Ellen, I did think of Celadic Disease at one point but I have my doubts about it for several reasons. He also hasn't been eating any gluten lately anyway ...not because he's avoiding it but because he has a very poor appetite.
Lymedin, I do plan on getting more aggressive with calling for cancellations. If you don't mind sending me a PM and letting me know the name of the dr. I could see if he could fit us in. I would appreciate that.
I just feel so frustrated since his health is failing so quickly and I'm not even really sure if it is Lyme or maybe he has something else too.
I hope his test results tell us something this week.
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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posted
Symptoms can vary in all of us, due to the particular strain of bacteria, what it affects in us, our genetically weak sites and our stress level.
We can also go downhill quickly if we've been rebitten. Ticks are so small that people often don't know they've been bitten.
I'd say the symptoms you're describing sound like Lyme.
We're all different in what we respond to. We have to try and see if something works for us. It takes patience.
You can study here what people do. You can use the Search function at the top of the page and type in any word or phrase and archived threads will come up.
For eyes, drinking mangosteen juice completely stops all my Lyme eye symptoms, including the blurred vision. It's an anti-inflammatory antioxidant juice.
You can find various mangosteen juices in healthfood stores and online. I drink 1/2 oz in the am and pm.
If antibiotics turns out to be challenging, people also treat in other ways, for example, also with herbs, like the Buhner herbs, as described in Buhner's book, "Healing Lyme." And there are more protocols too that you can learn about.
Hm - I just read what you posted about waiting for test results. They don't always come back positive even though someone has Lyme. Check out www.canlyme.com/seronegreasons.html -
That's why Lyme doctors treat clinically, by history and symptoms. My vote would be to get him in to see a Lyme doctor as soon as you can. Maybe you can get some more referrals?
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Robin, I've never heard of mangosteen juice and will look into it! I'm glad it helps your vision problems. Thanks for the tip!
We just recently got a copy of Buhner's book "Healing Lyme". I have to read it. Maybe we can try some of the alternatives for my husband to try instead of antibiotics.
We are currently seeing an LLMD (got his name here) and he's very compassionate and is definitely trying to do much more than any other doctor that we've seen so far.
I find myself getting upset and very scared that not much seems to be helping him so far and instead continues to deteriorate. Though he's only been on some of these treatments for a short while now.
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
These are symptoms of Lyme and co-infections. He needs to begin treatment ASAP.
Look into the co-infection Babesia duncani. It causes all of these symptoms and can be a very aggressive infection.
Those with a previous history of Lyme do tend to get much sicker with a subsequent exposure.
You will be told a million things by a million doctors, but only good LLMDs will recognize and treat multiple tick-borne pathogens.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm glad your doc is holistic and compassionate, but truly compassionate doctors do not watch their patients deteriorate.
You need a doc who has seen thousands/tens of thousands of Lyme patients. Patients do get this sick this quickly and require immediate and appropriate treatment.
You are right to be scared and frustrated. I'm sorry you're in this situation. It IS confusing.
You will feel better when you find a doc who understands what is happening and prioritizes appropriate treatment. Make this your priority.
posted
Just wanted to tell you that I know of a woman who got into see Dr. C in NY in a matter of a couple of weeks! He is a very well known LLMD
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
It's possible he could be infected with the Filarial Worm co-infection which can cause a lot of his symptoms and is often unrecognized even by LLMDs.
Check out www.lymephotos.com and also visit the lymestrategies group for more on the salt/c protocol and other alternatives.
I had EVERYTHING pictured on Lymephotos come out of me after 6 mos of strong antiparasitic herbs and salt/c. I too was going down hill fast and treating for parasites is what pulled me out of it.
The Filarial worm has been found to cause river blindness and is what could be causing his vision problems. Research all you can about parasites.
There is also a combo of Ivermectin and doxy that is helping people. Do a search on here for Ivermectin as well as other antiparasitic drugs. Good luck,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree with boxermom that it sounds like babesia. There are multiple infections with lyme and the medications that hit borellia will not affect babesia which is a protozoa like malaria.
I had similar symptoms - profound fatigue, ataxia (walking like a drunk), vertigo (spinning when you tilt your head to one side) and a general dazed feeling "like walking off a mountain top into the clouds".
It also affects the mind causing confusion, difficulty concentrating and following a train of thought, poor name recall, and memory loss. It attacks the red blood cells.
FL1953 causes similar problems. It has been linked to ALS and other auto immune diseases. The organisms live in biofilm which feeds off of lipids and arginine so a low fat vegan diet is recommended. The diet has done wonders for me in 6 weeks. My energy is much improved and I am currently off medication, taking a break to detox, but having very mild symptoms.
Most of us have methyl cycle mutations which set us up for disease because our immune systems are weakened. If you can afford it, get this test done. The treatment is easy and makes a huge difference.
The second site gives recommendations as well. It does not hurt you at all to follow these recommendations as if you have all the mutations because the supplements and diet (which is similar to Dr. F's) are healthful.
Buhner and all the other herbal recommendations are one size fits all. The methyl cycles test is taylor fit to your individual needs.
The herbs are good support but will not take care of advanced disease states. Your husband needs antibiotics and antimlarials for that. Addressing mutations will strengthen his immune system and ability to detox so he can tolerate the drugs. The diet will break down biofilm protecting the pathogens.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
PM sent with LLMD info.
Posts: 2094 | From NY | Registered: Oct 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
So sorry for your troubles. Keep reading on this site. There are brilliant people here sharing life-saving ideas.
Don't forget the "bosom buddies" to Lyme: Co-infections Parasites Candida Mold Deficiencies Heavy Metals Detoxification issues Etc. Etc. Etc.
There is so much to know on all of these topics. And they cannot be ignored for those who are most ill.
I hope you can find a great, open-minded, smart LLMD who can take you soon.
Best to you and your husband, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Hi signs9. Oh my goodness, I reread your post twice. It is almost the exact replica of my husband. He has lost 40 pounds, basically lost the use of one foot, fatigue, no joint pain, tinnitus. Almost everything is the same. We switched LLMDs in April. They are still trying to come up with the perfect combination of drugs for him. He has lyme and babesia. He has another appt. tomorrow actually. He currently is on Rocephan IV. His LLMD pulses it, 5 days on, 2 off so that he doesn't herx. I am going to PM you with LLMDs name etc...
Posts: 305 | From United States | Registered: Nov 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Though I did have pain, I had all the symptoms your husband has as well. Those symptoms can be caused by Lyme Disease. At one point I looked so bad and needed help walking, and in a big Church that seats over 1500 people, the priest came up to me to ask about my health. I was so bad I stood out in a crowd of 1500.
My loss of balance (more accurately, loss of proprioception) was a result of babesia. I also became very thin from babesia.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Oh my goodness!! ...You are all so helpful and though my husband is having lots of physical problems he still can think relatively clearly (often more so than me!) and I'm going to forward all of this information to him.
There is so much one has to research and read up on that that in itself can be overwhelming.
We did get back one test result from Igenex this morning and he has Bartonella. We're still waiting on more results. He's also being tested for metals and adrenals. He started some new meds today.
He also seems to be a little better today as well. I think it's a combination of some of the vitamin therapy he's been on for almost two weeks and knowing something from the tests.
I realize that this is going to be a long hard battle but I would be thrilled if he could just go back to how he was in January as a functional person.
Thank you all and I plan on going through each suggestion!
Posts: 34 | From Bucks County, Pa | Registered: Apr 2012
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