posted
Hi all. I am new here. My dh has been sick since September with all of the usual Lyme symptoms, but told all the usual things by our PCP. Too much exercise, too little. Stress, anxiety. "You're getting older, must be arthritis", etc. Bad allergies, mild flu, you name it. In Nov. I insisted on a Lyme test, though I knew nothing about them. We were told it was negative. I didn't think any more of the test until mid-December when I saw my young, normally healthy dh struggling to hold a shopping bag filled with about 5 pounds of food.
I asked for a full print-out of his Lyme test and saw that he was positive for p41 on the Western Blot. Then it all fell into place. The huge, weird rash he had on his leg in late July/early August, the "flu" he had over Labor Day weekend, and all the steadily progressing and bizarre symptoms that have increased ever since.
I won't bore you with every detail, but we finally have an appt with a Dr.D in MA in March. And I was able to convince an MD in urgent care to put my dh on doxycycline until we get to MA in March.
My question is this...my husband still feels like hell. Some days worse than others. Some days the weird headaches and chills, all days the joint pain and difficulty walking, even though he is on 200 mg of doxyxycline a day.
What else can I do to help him through the next 6 weeks until we can see this doctor who will hopefully understand this and help us.
A friend suggested a low-carb diet but he has lost so much weight since September that he weighs less now than he did in high school.
Any other ideas to relive his pain or anxiety or cheer him up or at least offer him some encouragement?
Thanks.
Posts: 11 | From Upstate, NY | Registered: Jan 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Welcome to the board.
200mg of doxy isn't enough to cross the blood brain barrier.
It needs to be at least 300mg-600mg a day.
Your husband should be supplementing with magnesium,
And taking probiotics to prevent yeast build up.
Low carb/low sugar diet is recommended due to antibiotic use and yeast over growth.
I was started at 200mg of doxy following my Lyme diagnosis.
It made me feel so bad. That is normal for us.
Most of us will have a herx (worsening of symptoms) on meds.
This is caused by toxins released by die off of bb.
I am glad your husband is to see a LLMD. It sounds like he
Possibly could have co-infections as well.
There is a section at the top of Medical called Newbie links.
Tons of info there.
Tell your husband to hang in there.
He is not alone.
There are so many of us here who either are or have been in the same boat.
Sending you both positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
He is on an antibiotic so he needs to take probiotics to keep the yeast under control. Theralac (you can order online) is one that many people swear by. It seems expensive but will be worth the investment.
As far as the low carb diet. You don't want to encourage yeast growth but on the other hand your husband is wasting away. My husband has the same problem so he can't do that diet. One size does not fit all when it comes to diet.
Have him eat healthy whole grain food. Definitely carbs with every meal. Underweight is not healthy.
I hope March comes soon for you.
Posts: 984 | From San Diego | Registered: Nov 2006
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bettyg
Unregistered
posted
welcome scrappy!
please look over this list carefully ok for CO-INFECTIONS he may have too ok!
dr. D does NOT test for co-infections!! *****************************************
Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis:
Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella.
Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema.
BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes.
X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
i've also sent you my lengthy newbie package of info plus! hang in there. start reading to find the things you need.
as i state in my newbie package, copy all of it to your word processor where you can use EDIT, FIND, and type in what you are looking for to do a search; saves valuable time!
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bettyg
Unregistered
posted
also have him read the SUCCESS STORIES found at top of SUPPORT or print them off since the lymenet board goes down frequently!
he'll find encouragement plus in there ok!
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posted
When I was on my first two treatments (doxy and tetracycline) I joined the YMCA and used the sauna. I think it helped a great deal with the herx reaction. I felt so much better that we're installing one in our house. But the Y is a good place to check it out. I started at 15 minutes a day then up to 30 which is more than anyone recommends, but I took water with me and drank a lot while in the sauna so I wouldn't dehydrate. Hope this helps.
Posts: 12 | From Maysville, KY | Registered: Jan 2008
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
all great advice there Mrs...scooby...
A lot of good people here to help!
It always kinda strikes me funny about how semmingly newbie material don't know or seem to
make the same mistakes when they first get on board.
When I first saw this site, we did'nt have all the newbie information graciously supplied by oldies/but goodies, around here.
keep up the good work! zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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bettyg
Unregistered
posted
copying ALL replies from accidental 2nd duplicate thread here.... ******************************
I would TRY to get your husband 400mg a day doxy or at least 300 if he is small.
Till you get to the LLMD. There ARE places to get it,hook or crook!!
But the 200 is better than nothing for that long!!
Its a long bumpy ride,,,a long TRIP back!! so supporting him thru the whole ordeal is grand!!
You picked a cool cool name,,,not nearly so cool--just don--
-------------------- just don
-------------------------------------------------------------------------------- Posts: 2580 | From: Middle of midwest | Registered: May 2001 | IP: Logged
Good for you for pursuing this before it becomes more debilitating!
I suggest till you get to your LLMD that you get him to lay off of the sugar and simple carbs. My daughter has babeosis and lyme and we found that sugar caused absolute hell. I'm talking one cookie could be a couple of days of worse fatigue, aches, moodiness, etc. Even she at 4 knew it just wasn't worth it.
Apparently, lyme bugs just LOVE sugars (including digested simple carbs). It's a bummer to give up treats, white flour, pasta, potatoes, alcohol, but the quality of life is too important.
Then, let me second CalLyme, he should be tested for co-infections, preferrably through a lab like IGeneX. You should also keep a journal of his symptoms so that you know WHEN things are happening. Some of these tick-borne diseases have life-cycles that make symptoms flare on schedule every 30 or 21 days. And some of them have specific and particular symptoms like weird rash striations (bartonella) or night sweats (babesia).
Hang in there. And don't hesitate to post medical questions on the medical board. Even silly questions will get answers. -------------------------------------------------------------------------------- Posts: 21 | From: saugerties, NY | Registered: Jul 2007 | IP: Logged
just don Frequent Contributor Member # 1129
posted 30-01-2008 10:54 AM -------------------------------------------------------------------------------- Catskillmama has a GREAT point,,,avoid those things and feel better,,,least no worse.
What I wanted to add,,,drinking soda or pop or whatever you call it THERE,,,can cause GREAT amounts of pain and fatigue.
I didnt drink any for a long time,,,then one HOT day I drank 2 in a day thinking THAT cant hurt ya,,,,
spent the NEXT two days on the living room FLOOR,,,I kid you NOT!!!
So moral is if he drinks alcohol OR pop discontinue ALL,,,at once!! I dont know what causes that reaction,,,but it DOES happen!!
Smoking is another ill advised vice of lymies,,,some LLMD's even refuse to treat smokers cause it holds back progress.
I think YOUR wonderful,,,so many in YOUR place arent!!remaining--just don--
-------------------- just don
-------------------------------------------------------------------------------- Posts: 2580 | From: Middle of midwest | Registered: May 2001 | IP: Logged
just don Frequent Contributor Member # 1129
posted 30-01-2008 11:06 AM -------------------------------------------------------------------------------- GEE< I just read what I posted and realized that ALL are donts,,,here are some do do's,,,
Get some GOOD magnesium from your pharmacy and supplement that,,,BB takes ALOT out of us. Take as much as possible without the runs!!
Then also get some citrical or similiar GOOD calcium and supplement that along with. 2 calcium to 1 magn.
DONT get the magn off the store brand at wally world or sismilar places,,,it is WORTHLESS!!BTDT!!!
A proper ratio HAS to be maintained for max effeciency. It greatly decreases MY pain. helps with muscle palps and twitches.
does he have alot of joint pain and beginnings of arthritis?? If so stave off the damage with osteo-bi-fles Glucosamine and clondritin.
Have to take for a couple months for max effect. I am 'thinking' when I started that it slowed or ceased my artheritis development. Same with calcium,,,ceased my tooth errosion!!
This disease sucks so many things OUT of our systems that suplements help tons!!
Your mileage may vary,,,keep exploring different ones,,,take for couple months,quit cold turkey all by itself,,,
that tells you IF its working!!WISH somebody told me before I had to learn the HARD way!! I have a PHD from the school of hard knocks!! still--just don--
-------------------- just don
-------------------------------------------------------------------------------- Posts: 2580 | From: Middle of midwest | Registered: May 2001 | IP: Logged
mrs.scrappy Flash Member Member # 14520
posted 30-01-2008 11:13 AM -------------------------------------------------------------------------------- Thanks everyone. You've all given lots of good advice. Just Don, I'm printing out what you said about alcohol. We don't smoke or drink soda, but my husband loves to have one very good, imported beer each night before dinner. I've told him that I heard it might make him feel worse, but he said he would wait on "rumors" until he heard it from the doctor.
Wow - during my Christmas baking season, when I was turning out pies and cakes and cookies and my husband was eating them like potato chips, he was in really rough shape. That's when I took him to the urgent care clinic and literally begged them to give him doxycycline. Now I feel silly for not knowing the correct dosage to have pleaded for. And I've since curtailed the baking. I've seen a direct correlation between his eating cake and cookies to his feeling pretty bad one or two days later. This is too bad since he's getting so thin.
He has a follow up with a skeptical PCP next Friday. I'm thinking of taking the day off from work to convince the guy to up his dosage of doxycycline. Maybe I'll just block the door and not let him out of the room until the Rx is in my hand. Hey, my husband didn't knickname me Mrs. Scrappy for nothing!
I am so shocked and saddened by the awful way he has been treated by the urgent care docs, rheumatologist we waited 4 weeks to see, and his new PCP. His old one left the practice the week his lab results came back. Boy, March cannot come too soon! I hope this LLMD can help. -------------------------------------------------------------------------------- Posts: 3 | From: Upstate, NY | Registered: Jan 2008
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