posted
I recently received my western blot back and my IGG was negative but my IGM was positive ( 23-25+, 34IND, 39IND, 41++) I am waiting to see my LLMD again but is this enough to be considered Lyme.
I haven't had much physical pain but the cognitive effects have been crazy. I feel so tired, but can't sleep. I am anxious one minute then depressed another, then I have some OCD moments and then paranoid thinking this has to be a brain tumor or something.
The problem is I have been a healthy person my whole life and even played professional baseball until the anxiety got to be too much. I just didn't know if 2 INDs and a couple ++ were enough to constitute lyme given the fact that most of my symptoms are psychological (except chills, headaches etc....)
Also my doctor prescribed me an antidepressant which did a little but not much. I just filled my antibiotics and was wondering if you can take antidepressants along with the antibiotics. Also my testoterone was found to be low ( Im 25 a former pro athlete which makes that weird).
Can the Lyme affect the testoterone? Also what antibiotics seem to work the best ( i was given doxy ceftin zithro and flagyll) I was so healthy and now my brain is so foggy I have been close to getting all kinds of tests ( brain scans MRIs etc...) I have heard this site is good with questions like this while you wait to see a doctor.
Please, any advice would be appreciated. I am kind of nurturing the hope that there is hope that I might return to normal and follow my baseball dream once again.
** moderator's note - spaces added for easier reading **
[ 03-23-2010, 06:21 PM: Message edited by: sixgoofykids ]
Posts: 5 | From springfield, MO | Registered: Mar 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to the board! I spaced your post because many Lymies have trouble reading big blocks of info.
You're waiting to see a doctor? It sounds like with that group of meds that you are already seeing an LLMD?
Your combo looks great to me. It's a strong combination. I'd start with one at a time, wait a few days, then add the next. I didn't do that at first, then with one combo couldn't tell which med was causing the problems so had to stop them all and add them back one at a time.
Also, be prepared to have a herxheimer reaction. That is where you feel worse before you feel better.
Lyme is a clinical diagnosis based on symptoms. If you are having Lyme symptoms and a Western Blot such as yours, yes, I would say your Lyme doctor will most likely diagnose you with Lyme.
Someone else will have to tell you about the antidepressants. I know many take abx and antidepressants, but I don't know details.
Lyme can affect hormones.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
It sounds like your doctor knows what he/she is doing with that combination. It's good that you are taking Flagyl in the beginning, that often seems to be the key for some people but they don't find out until after a couple years of treatment.
Hang in there it can be a long road, it's an adventure you will not forget.
Keep a positive attitude and you will be fine, you'll get better.
I don't think taking antidepressants is a problem but ask your doctor to be sure.
Paranoid thinking is common with Lyme. Mine is almost gone with treatment. It was the worst part for me. It's one thing to feel physically lousy but it's quite another to feel fearful all the time.
Posts: 2232 | From USA | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The chances that you have a brain tumor are very small because all the people I knew with brain tumors did not have the mental problems you are describing.
The brain tumor gave them physical problems, like movement problems. Depending on where the tumor was, it could also cause headaches.
You have a positive lyme test and lyme disease causes all the mental problems you are describing, so the vote goes to the lyme disease.
Lyme doesn't always cause physical pain. For example, I had it undiagnosed for at least 10 years, and I only got some episodes of physical pain near the end.
Lyme definitely can affect testosterone and all the female hormones like estrogen and progesterone. It stopped my production of estrogen and I had to go on hormone replacement to have a normal level of it.
This illness can affect any bodily system it chooses to attack--brain, sex hormone production, adrenal glands, intestinal tract, you name it.
Lyme can imitate all of the mental illnesses including OCD, depression, bipolar disorder, paranoia, hallucinations (including musical hallucinations), etc. and has caused some lyme sufferers to end up in mental hospitals temporarily until the real cause was found.
Go on the Internet and look up Virginia Sherr and the word lyme. She is a psychiatrist who got lyme disease. She gets patients all the time (I think she said at least once or twice a week) for psychiatric problems, and she refers them to lyme doctors because she can tell that is what they are really suffering from. She says to treat the lyme for a number of months and you probably won't need psych meds, but if you still do, she will give them.
It has been 5 years since I completed my lyme treatment, and I am symptom-free, enjoying my life. I have the same life I had before lyme disease.
So, once you get rid of this disease, there is no reason why you can't go back to baseball or anything else.
The best thing you can do right now is to get an education on your disease. The best document to give you your degree in lyme disease is the Burrascano Lyme Treatment Guidelines. It is found here:
Written by the lyme guru of the world, Dr. Joseph Burrascano, it is not an easy read for the layman, but it will allow you to evaluate your lyme treatment and become educated on all of the complexities of lyme.
You can see all the antibiotics that work on this disease and the special meds needed to knock out the coinfections that come with lyme disease.
Spend a lot of time studying this document, and you will be getting your answers from one of the best there is. And, if you ever get a chance to hear him speak, be sure to go. It is so worth it.
Contact a local lyme support group and see if they can notify you if any group nearby is having him as a speaker. Hundreds of people turn out to hear him.
As you will read in Burrascano, the diagnosis of lyme is made by a knowledgeable doctor after listening to you describe your symptoms and examining you and in conjunction with relevant tests. But, no test is reliable enough to use alone to make the diagnosis. So, you have been diagnosed and your positive test is just supporting the diagnosis. Don't doubt any longer that you have lyme disease, unless you can come up with some other disease that would give you this test result and would cause all of your mental symptoms.
Notice the Burrascano exercise requirement (1 hour of weight lifting every other day). My lyme doctor and others I know tell all their patients that this exercise requirement is a must for a person to get well. Evidently, it boosts the immune system. This is necessary because lyme compromises the immune system, sort of like AIDS. So, if you are able to begin doing it now, I recommend it.
When lyme causes as many emotional symptoms as you are having, it is common to be given an anti-depressant to help you deal with them while treating the root cause of them--lyme, babesiosis, and bartonella.
My best advice is to see the best doctor you can. The doc is the key to getting well from this disease. I can't emphasize that enough. It takes a lot of expertise to be able to get a person well from this disease. Based on your meds, I think you are off to a good start, as others have said.
But, it is a marathon, not a sprint, when treating lyme disease. So, be patient. Give it a year. Don't know how long you have been sick, but if more than a few months, a year is probably the minimum treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, An IgM means "active" &/or "newer" infection, you need treatment.
Many people are healthy (including me) and very active..may be part of the problem, exposure to insects being outdoors, etc.
Yes LD can effect (infect) every bodily system including hormones like testosterone.
You are already on the right track by having an LLMd, that is good.
To study the disease more, click on the link below, there are other Lyme patient stories and the Resources link leads to other reliable websites that will help you learn more about LD.
Symptoms are many - rarely do we have the same mix of symptoms. I have a ton of pain and later came cognitive stuff. One reason why mainstream Md's have a impossible time diagnosing LD.
I hope you were tested for co-infections. Very important. Co-infections are other bacteria that most of us have in addition to LD.
Abx treatment varies from person to person. There is no one size fits all. It can take time to find the right combo for each person.
In the doc, there is a pro baseball player who was first misdiagnosed w/Parkinsons and it was LD. Besides that, it will really help you understand the disease. You can purchase the DVD here: http://www.underourskin.com/store.html
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, An IgM means "active" &/or "newer" infection, you need treatment.
Many people are healthy (including me) and very active..may be part of the problem, exposure to insects being outdoors, etc.
Yes LD can effect (infect) every bodily system including hormones like testosterone.
You are already on the right track by having an LLMd, that is good.
To study the disease more, click on the link at the bottom of this post, there are other Lyme patient stories and the Resources link leads to other reliable websites, symptoms lists, abx lists - that will help you learn more about LD.
Symptoms are many - rarely do we have the same mix of symptoms. I have a ton of pain and later came cognitive stuff. One reason why mainstream Md's have a impossible time diagnosing LD.
I hope you were tested for co-infections. Very important. Co-infections are other bacteria that most of us have in addition to LD.
Abx treatment varies from person to person. There is no one size fits all. It can take time to find the right combo for each person.
In the doc, there is a pro baseball player who was first misdiagnosed w/Parkinsons and it was LD. Besides that, it will really help you understand the disease. You can purchase the DVD here: http://www.underourskin.com/store.html
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Yes, Lyme can affect your testosterone levels. Many men here (me included) have low testosterone levels.
My urologist prescribed Andro Gel and it didn't help me.
Alternative doctor gave me DHEA, didn't do much for me.
Endocrinologist gave me testosterone injections (to do at home myself), didn't do much for me.
I'm taking some herbal remedies now but too soon to know if it's going to help me.
But yes, it's very common among us men who have Lyme disease.
Maybe some others will chime in and have some better advice to offer you regarding low testosterone.
posted
I'll add to the low testosterone problem but I haven't found a good solution yet.
My guess is the testosterone will come back on track when the Lyme infection is addressed and treated.
I avoided the gel just because of some of the side effects.
Maca root seemed to help me the most -- you can buy it in capsules at a vitamin store -- but not enough to fix my, 'ahem', lack of erections.
Posts: 194 | From Colorado | Registered: Nov 2008
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posted
Interesting, i haven't heard anybody say that the testoterone has really helped them. The doctor and all the articles i have read said it does really well with anxiety depression, fatigue, etc...
I have also talked to people about the doxy and they didn't say too many good things about it. Hoping someone has something good to say about it because i think thats what i am supposed to start taking first.
Also, do you only take one antibiotic at a time, or what is the normal protocol. Again I will be seeing my LLMD soon again and will ask but sometimes you just want to know now, I guess its part of the anxiety.
Any suggestions as to supplements to take with the doxy and other antibiotics, I know nystatin is for the yeast but surely there are other things that help because doxy can be rough from what i hear
Posts: 5 | From springfield, MO | Registered: Mar 2010
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posted
I have been on doxy for 3.5 months now, and added Biaxin a couple of weeks ago.
The doxy is the first line antibiotic because it can kill not only Lyme but also ehrlichia and maybe other possible coinfections. It is also inexpensive, and has been in common use for a long time.
I had a herx from it (about days 3-13), but I didn't from Ceftin or (so far) from Biaxin, so I think it is effective for me at killing some Lyme bugs.
It has caused me some nausea. My LLMD suggested taking it an hour and a half to two hours after breakfast and dinner instead of immediately after, and that has helped reduce it some.
Another benefit of taking doxy a couple of hours after your meal is that you don't have to worry about it interacting with diary products.
My LLMD told me not to lie down within half an hour of taking doxy. It's a bit inconvenient sometimes to have to stay awake 2 to 2.5 hours after dinner, but so far I am managing. I can also nap in a recliner in a semi-upright position while I wait for the half hour.
I have also used ginger capsules and ginger tea to help with the nausea. Biaxin causes me a bit too, but not as bad as the doxy. I can't take doxy at the same time as other pills or it is worse.
I already got a sunburn on the first sunny day, so be careful to stay out of the sun or cover up and wear heavy sunscreen while on doxy, and wear good sunglasses to protect your eyes from the sun.
You must take good probiotics the entire time you are on extended antibiotic treatment, to prevent yeast and c. diff. Your LLMD should tell you to do that.
Do a search for "probiotics" and you will find various threads where people talk about which ones they use.
Some of the "roughness" of doxy may be due to the strength of the herx you could have. This depends on the amount of bacteria in your body and whether you have coinfections, how easily your body can remove toxins, etc.
That may differ greatly from one person to another, and may happen with any effective antibiotic, not just doxy. You can herx one time on a drug and start it again later and not herx, or vice versa.
Some people don't herx at all, and others herx a lot for a long time. Most are somewhere in between.
If you do things that help your body's efforts to remove toxins (generally referred to as "detox"), it may lessen symptoms of herxing.
These can include simple and inexpensive things like taking warm epsom salt baths and drinking lemon water, but there are lengthy threads with many other possible things to try.
Some LLMDs will start you out on a lower dose to see how you react, and then gradually increase it to the desired higher dose.
If you take multiple antibiotics, ask your doctor about starting one the first week, then adding another the second week, etc. Then you can tell which one might be causing a problem.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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