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chronic lyme
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chronic lyme

My husband has had numerous problems since 1998. They came to a head in the spring of 2001. He has been unable to function normally since that time and is totally disabled. I will list some of his symptoms.
He has stabbing pain in head, (like a knife) and also in other parts of his body.

He has neuropathy in his hands and feet.

His face is numb around his lower jaws. He has numbness in other parts of his body as well. He is not diabetic
.
He had a treadmill test they had to shut it off before the time was up because his heart rate was dropping. (He almost collapsed from weakness when it was turned off)

He has suffered memory loss and is unable to concentrate. He likes to read but rarely remembers what he has read for very long. He often looses his “train of thought”

He can’t exercise because he has no strength or stamina. Occasionally on a good day he will try to walk on a treadmill. He can only walk on it if it is going on the lowest and shortest speed and setting. He sometimes experiences a feeling of shutting down if pushing too hard. (He has to consciously think about lifting his feet to even walk when this happens.) His balance and gait are off. He sometimes falls when he gets off balance.

Pain moves unpredictably throughout his body, One day it might be in his foot, another day it might be in his hand, arm, groin, leg, side, head, and other places. The pain moves randomly and with out any rhyme or reason with different degrees of intensity and frequency all over his body. Right at this particular minute he is having intense pain in his right arm around his elbow and it radiates down to his hand.

He doesn’t drive because he is on so much medication and is prone to lightheadedness or dizzy spells if he moves even the slightest bit too quick or unexpectedly.

This week he has another episode when he had excruciating pain in his lower left side and back. He hasn’t had this lately, but the 3 times he had it previously he went to the emergency room and no one was able to determine what was wrong. It is not a kidney stone. Pain medication and prayer took him through it this time.

Our family doctor suspects lyme. My husband believes it is lyme as well because he had a  rash and tick in 1997. He has seen a 2 neurologist, 1 rheumatologist, an ENT, an Infectious disease doctor, a urologist, a gastroenterologist, He has even been to Mayo Clinic. He has had so many blood tests and other tests I can’t name or remember them all.

I don’t expect a diagnosis, but wondered if there was anyone else that had all this and if so did they have a treatment that helped. His treatment helps the pain, but is not making him better. I wondered if there was something out that can stop the progression of his symptoms or disease.
He currently is taking lyrica, cymbalta and a pain medication. As I said previously they have helped some with the symptoms… but not the cause. Anodyne therapy on his feet has also given him relief for the pain in his feet.

Thanks.
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Avatar_f_tn
Sorry to hear about your husband. I think your GP could be on to something. IMO, your husband has many symptoms that sound like lyme disease AND the co infections that go with it.

Conventional doctors don't understand lyme disease.  Conventional labs used by most mainstream doctors are VERY unreliable. Once the bacteria is in our systems it hides and doesn't easily give a positive test result. Doctors that specialize in LD are referred to as Lyme Literate Doctors.. they not only test for lyme, and they also take into account "symptoms" in order to make a diagnosis. The CDC states that lyme disease IS a clinical diagnosis!
The hard part is finding a Lyme doctor...Conventional doctors follow IDSA' s guidelines, and only treat for 6 weeks...this group doesn't believe in Chronic Lyme....Lyme doctors treat until symptoms are gone..big difference.
You mention he had a tick bite and a rash,,,,,that alone is enough evidence he does have LD. There is nothing else but a tick bite that signals LD.. Acutually, because of his tick bite he "should" test positive,,,but there is a possibility he too would have a negative result! How can that be? it happens all the time!
so, The hard part is learning about this disease, AND finding a doctor who understands LD!
If I were you I would begin reading all you can about this controversial illness.
Here's a few places to start:
ilads.org
lymenet.org
publichealthalert.org

I believe with the right care and the right doctor your husband could find a road to wellness.
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Avatar_n_tn
Thank you for your response. We believe it is LD but like you said our GP doesn't really know what to do. He did give him 3 weeks of antibiotic via IV about 4 years ago and  he has given him doxycycline 2 times for a month. GP's  just don't know what to do.  He tested positive on the elisa back in 01 and 02 but the western blot was always negative. Of course that was enough at the time to convince the "big wigs" it wasn't ld.I sometimes wonder if the same treatment that they give ms or something would help. My major concern is that it is ld and that he is getting worse because of a lack of treatment. We live in rural western ky and there are no lyme literate doctors around. I think the closest one was around Cape Giraldeau Missouri and last I heard he was in trouble with the AMA for his treatment with antibiotics. I do appreciate your input.. I have been reading about this for a long time.. but to tell you the truth I am afraid of some of the treatments that have not been approved. I will just have to find the right doctor. It is hard to watch him get continually worse.
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Avatar_n_tn
Ok you know its lyme....it is very clearly lyme!!!! some people on here might not agree but sometimes with lyme you need to think outside the box for treatment antibiotics arent they answer always sometimes yes but not always I read about people getting better from ABX and then some who for years take abx after abx with no real help....there is a doc in kansas who has a protocol for lyme Dr. J
and there is something called MMS that is used to cure malaria the website for this is called miraclemineral.org and you can watching MMS in action on youtube.com type in jim humble but I know several people who had chronic lyme for over 10 years and are now better due to Dr. js protocol and some that are trying MMS with excellent results just after 2 weeks! I am waiting from a positive from igenex and then I will start with one or the other, remember detoxing is important aswell to get the toxins out of your body also change diet to no sugar and healthy I eat all organic and low to no sugar no dairy and supplements are important like magnessium/calcium combo I take a liquid form fats like omegas I take fish and flax seed oil B6 is important. People do get better even if they are as sick as your husband but please I know there are some docs out there that are really good I have only found 2 myself but please read as much as you can about lyme which you probably are doing already. Educate yourself on everything relating to lyme from detoxing to treatments you and your husband are your only health advocates!!!! Docotors dont always know best!!! and they are wrong. wrong enough to let your husband suffer like this and the antibiotics he was given were not given long enough by a long shot! go to healingwell.com and check out the lyme forum there are alot of great people there who can help you and your husband. I hope he is feeling better soon!
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Avatar_n_tn
I didn't know that sugar was bad for lyme. Is that true?
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yes diet changes are very important....you can have a big yeast problem with abx treatment and the buggers thrive on sugar! also if you take magnessium do not take it with in 4 hours of abxs they will cause your body not to absorb to abx as well and you wont get the most out of it. VERY IMPORTANT!!!
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Avatar_f_tn
It takes alot of time and energy to understand all that goes with this TickBorne Illness. We know there are 300 strains of Bb and lots of co-infections. It's this very reason that some of us get better while others of us seem to struggle..My lyme doc treats for everything....Lyme, Bartonella, Babesia, and "changes" up the abx.

I travel 3.5 hrs to my doctor; so I fully understand the lack of specialists in the neighborhood.

You ask about the MS treatments being of some help, I have MS and was using a Disease Modifying Drug for 2 years. Because of having MS and the similarities of these 2 illnesses, I began to read and learn about IF MS is caused by an infection. The research does point to this, and for me when I did have bands test positive using IGeneX labs, I know that for me LD is the Cause of my Multiple Scarring..
You mention abx not being approved. hmm, are you aware that the IDSA is being sued by the Attorney General of CT because they "blocked" the ILADS group of doctors that have research backing the need of long term antibiotic use?  This disease is very political and so far only the patients are losing!

Mainstream doctors don't complain about doctors giving long term abx to young people with acne , or toddlers that have ear infections long term abx. It only comes into play when talking about LD.

again for me, I feel much more at ease taking abx than I did injecting myself daily with Copaxone. this while my neurologist said they don't yet have enough data on long term effects of the drug! but he felt I should be on a drug so I don't grow old and need a wheelchair..

My lesions are beginning to go away,,,and I haven't had any further enhancing lesions since lyme treatment. I'm feeling better, stronger, each day.

I do take probiotics, I do detox, I also take vitamins. This bacteria is a very smart bacteria, and I think we need to whatever we can to help eradicate it along with abx.
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Avatar_n_tn
Hi Tory
where do You live? I am in VA and looking for a LLMD? I have gone ILADS but all the docs here are full and not tkaing new patients! I am willing to drive to find a doc!
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Avatar_n_tn
I am going to purchase the probiotics. He takes various vitamins. I think I will ask his gp for another round of abx for him. I am also considering going to Missouri for the LLD there. Travel is so hard on him though... it would really be difficult. I really appreciate all the input from you all. I should have checked here long ago. thanks again
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Avatar_f_tn
I live in PA- but my doc is in CT. It's shameful that there are so few good doctors out there.
Have you posted on lymenet under Seeking a Doctor? Lots of people there might be able to help you find someone relatively close to you.
Click on Flash Discussions then Seeking a Doctor. Give a short story about you,then wait for private messages.
Under Medical Discussions there is a Newbie link loaded with information, along with talking to a wide group of lymies.

JHM55
Great, taking probiotics while on abx is crucial. I take Theralac, and for the last 15 months I haven't had any problems with replenishing the good bacteria.
theralac.com

wishing both of us the best
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Avatar_n_tn
I do want to say that my husband takes Lyrica and Cymbalta. The Cymbalta helps with the tingling and burning in his feet. The Lyrica makes the pain controllable most of the time and he doesn't have to take as much "pain medication". He originally started on neurotin and then when Lyrica (alias- super nuerontin) came along he switched to it.
He takes it 3 times a day. The medication makes him feel tired and drowsy but it is better than pain and it keeps alot of the other symptoms at bay. It is a tradeoff that he is willing to make because he was his lyme was AWFUL until he started on the neurontin.
I don't know what we would do without it.
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Avatar_f_tn
Also try

I was on various oral abx for a year, but not start improving until on IV ceftriaxone for 5 months.

The good lyme dr. have problems with state MD licensing since they prescribe prolonged abx. I would be dead if I had not finally gotten the IV. Have had neuro lyme for 6 years. Just finished the IV one year ago, and slowly making progress.
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