dbpei
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Member # 33574
posted
I lost my hearing suddenly in one ear before I knew I had Lyme. Sadly, it has never returned and has worsened over time - both with and without the use of antibiotics.
With my hearing loss came horrible tinnitus, which sounded like a motor running nonstop. I believe this was caused by my brain trying to compensate for the sudden loss of sound. This noise has never gone away except during a few episodes of pre-syncope when my blood pressure must have dropped too low. I had some peaceful bliss for a few seconds!
Sometime soon after this hearing loss, I developed a high pitched ringing in my good ear. Since then, I usually have a symphony of sounds - with high pitched humming from my good ear and then the deep whooshing and motor sounds out of my bad ear.
On my good days when there seems to be less inflammation in my head, the tinnitus is only out of my bad ear (1 - 2 days a week). This allows me to hear out of my good ear without too much competition from the internal sounds in my head.
I notice that the more sound I am exposed to, the worse my tinnitus is. Even when I get up in the morning... as soon as I am exposed to noises like the toilet flushing or faucet running, the chirping escalates. This makes it really hard when I am out in public and there are multiple noises or conversations going on.
Hearing aids will not help me, unfortunately. All they do is turn up the volume of a distorted metallic sound from my bad ear.
I know that some of my family members think my tinnitus is no different from theirs and perhaps I need to just learn to live with this. I know I am not like I used to be. I still have many other symptoms, like bone pain, bug crawling sensations, odd sensations in my jaw and skull, and the list goes on and on...
Perhaps it is damage to the nervous system which has made my head symptoms so intense and difficult to cope with. I sometimes feel like the noise will drive me insane. On my good days when my head feels less inflamed, I am so light hearted and I feel almost normal.
Does anyone else here have a similar experience with TBI? I would love to hear from you!
Posts: 2386 | From New England | Registered: Aug 2011
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steve1906
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- - What is that ringing in my ears?
This is one problem I don't have but, this site below is a very good read. It also mentions lyme disease.
A protein called AAS dehydrogenase (AAS dehydrogenase - many names - Antiquitin is one - may also be involved.
It is PQQ dependent i.e., "PQQ dependent AAS dehydrogenase." PQQ helps mitochondrial biogenesis...making more mitochondria.
There is a new form of CoQ10 called mito Q that looks REALLY good and may work in synergy.
I ran across it when researching liver mitochondria.
We know, Bb uses the reverse transsulfuration pathway and makes *homocysteine* (which it does not need) from cysteine.
Now...
In proteins, "homocysteine permanently
degrades
cysteine disulfide bridges
and
lysine amino acid residues,
affecting structure and function."
Google this: ALDH7A1 lysine.
How do I know all this? My son has glutamate (brain accelerator) triggered pyridoxine (B6) dependent seizures which BEGAN at puberty when, in boys especially, *homocysteine* levels go up and he needed B6 help (we normally store a lot in our livers), he looks to plow thru the stores.
Instead of recycling homocysteine back to methionine (remethylation pathway), HE looks to lower homocysteine to cysteine (via B6 and CBS-enzyme) -> taurine (which lowers cholesterol) + GSH (= glutathione) + sulfate.
(Bob posted the picture of this process i.e., how our body lowers homocysteine and it is under the MTHFR post). Printing out the picture will help you see the "big picture".)
So to get more methionine (we need it!)...he eats proteins. Eggs over easy (to preserve nutrients in the yolk) are absolutely nec. for him. His cholesterol is on the low side. Low cholesterol - autism link.
Specifically he takes the active form of B6, PLP/P5P by NOW because that company's formula also includes
B2 (riboflavin which helps use B6) and Mg.
I won't get into it now, but B2 is playing a part in lyme too...there is not much Bb doesn't mess with, nutrient wise.
Aldehydes...after we drink a lot of alcohol and get a headache, these (aldehydes) are what trigger the hangover headache. Very recently Chinese researchers found out to stop the headache, drink a regular (not sugar free) SPRITE. Orientals make less of the protein to breakdown alcohol and thus get headaches which is why they were looking for a hangover-headache cure.
Another way is to take a little (150mg) capsule of ginger and B6.
Ginger is a PDE4 inhibitor and it reduces inflammation.
That combo. above was suggested to us by a psychiatrist who believes my son's seizures are "migraine seizures".
Besides taking the NOW B6 - a mere 50mg daily, he also takes a lecithin (hopefully to counter his fatty liver seen on an CT scan) daily and a small amount of DMAE (research it - impact of alcohol on liver mitochondria).
FOR HIM...that combo works to keep him seizure free, less anxious and
less depressed.
Consider, learn about, PQQ and mitoQ.
It might help. There are many diseases (and old age) that look to -> mitochondrial dysfunction.
P.S. Our son has a lot of problems with medicines...Prozac = more depressed, Lamictal = hard to rid fungal infection and fast weight gain, Depakote = "fatty liver", so we had to find a nutritional work around to stop his seizures and anxiety and depression.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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dbpei
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Member # 33574
posted
Thanks for that good site, Steve. I have been on it in the past, but not recently, and I think they have updated their information. I am actually a member of this group!
Marnie, I wish my brain could comprehend what you wrote. You must be very brilliant to be able to figure all of this stuff out. I don't know if this matters or not... but I do not have a defect of that ALDH7A1 gene as I checked with my 23andme testing I had done and I seem to be able to metabolize alcohol properly.
I have high homocysteine levels likely related to my MTHFR mutation. I have noticed that taking L-Lysine supplements has improved my auditory symptoms in the past...
I am high in B6 levels, folate and I also have very high serotonin and dopamine levels as well as DHEAS. I do not fit the profile of someone suffering from Lyme disease! Do you think these findings are meaningful in any way?
Posts: 2386 | From New England | Registered: Aug 2011
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Marnie
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posted
Overweight?
'cause there is a link between high serotonin and high dopamine...
"indicating an association of higher serotonin and dopamine turnover with overweight"
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
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posted
Marnie, I would like to lose a few pounds, but am actually within a safe BMI range according to my PCP. I have a brain lesion that continually shows up on my MRI's but no neurologist has diagnosed me with MS.
I wonder if lithium orotate can raise these levels. I have been taking it for some time at small doses of 10 mg per day.
Keebler, I am a big fan of Neil Bauman. I wrote to him to ask him about the decision to take antibiotics when you have Lyme disease induced hearing loss. He never got back to me, but it is probably because he is stumped on this one...
Thanks everyone. I was actually posting this thread to see if others had similar symptoms to me with their tinnitus and auditory issues. I was thinking that a diseased nervous system contributes in a major way to the sensations we have when our ears are damaged by this illness.
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Marnie
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posted
Lithium helps mitochondrial biogenesis...documented in lots of places...a good thing...make more mitochondria. Good, but they gotta FUNCTION too.
IMO...PQQ (which also stimulates mitochondrial biogenesis - make more) is safer than lithium which can build up and has to be very closely monitored.
Bipolar now considered "mitochondrial dysfunction"...
I edited and added more to my response above also.
MitoQ...
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Keebler
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Member # 12673
posted
- I can relate with some of the aspects you describe. But I don't have the cognitive or energy capacity to describe it. I can write some things but not others and I can't begin to do justice to sound issues I've encountered.
I am very impressed that you
"wrote to him to ask him about the decision to take antibiotics when you have Lyme disease induced hearing loss. He never got back to me, but it is probably because he is stumped on this one..." (end your quote)
yeah, it's a dilemma for sure. And, there may be some legal reason that he might not delve into this if it would appear to be advice. Still, it would have been nice to get some kind of acknowledgement . . . but we never know what's going on in someone's life or if the email even gets to them.
It's also nearly impossible to trace back to when our ears might have been damaged by noise . . . since effects of damage may not appear for years.
And our homes are filled with sounds that are ear damaging. No effort has been done to educate the public about the vacuums, blenders, hair dryers, etc.
I hope you find an answer. Soon.
Adding to others' good suggestions above: Lion's Mane medical mushrooms may be of help to nerve regeneration.
I really do think the mitochondria is a huge relevance here. -
[ 07-01-2014, 07:22 PM: Message edited by: Keebler ]
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dbpei
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posted
Keebler, do you think Lion's Mane is better than cordyceps for people with ear issues? I will look into this. Thank you. I hope you begin to get some relief from all of this also. I know you struggle with many auditory issues.
Thank you again, Marnie. I will look into PQQ and try to understand better the role of mitochondria in all of this.
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Keebler
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posted
- Sorry for the delay. I just saw this, actually by doing a Google search for an ear question.
I really loved how much better I felt when taking Lion's Mane. But I took a lot of it. Not just what's in a couple capsules. It was in a little packet, maybe about 1/4 tsp. and I think I took it a few x a day. It was from a top notch mushroom research place in Oregon but I don't recall.
At that time, it was $100. a month. I just could not continue it. I'm thinking that it's less cost now, but I've not taken the time to do the math / calculate purity, etc. By the time I calculate my base line expenses, this is just off the table so I've dropped it and all study of it.
So, it's hard to answer your question as cost and purity are variables.
Cordyceps is just very different. It's more for adrenal support, as I understand it. Buhner (I think goes into more detail about other help it may give but I've not studied his words on that).
Lion's Mane - in MS studies even 2 decades ago, seemed to help the myelin sheath repair "itself" - still that takes time so the Lion's Mane would have to be the best and the optimum dose to give that a chance.
But - my hunch is that Lion's Mane might be better for the actual nerve fibers. I just can't say more than that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I did treatment with a PEMF machine once and the ringing in my ears would go silent for 6 hours at a time afterwards! A top Lyme doctor said it probably quieted down the nerves to the ears.
PEMF = pulsed electro-magnetic frequency therapy. It's a machine that puts out audible clicks of e'm energy as we hold a white coil next to our body. I started with 10 seconds and worked up to an hour. My throat would close and I had to drink water. I think it was perhaps the toxins going into the lymph system for flushing out?
It took down pain too. E'M energy is what the body runs on for ion exchange, nerve exchange, and it gets depleted in ilness and injury. They first started using it to get injured racehorses back on the track, and then started using it on people. It's a powerful way to get the body's energy going again.
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dbpei
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posted
My new LLND just told me to try St. Johnswort oil (a few drops in the ear) to help repair nerve damage. I can't tell yet if it is helping. It may take some time. I will let you know.
I still would like to look into the Lion's Mane too. Like you, Keebler, it is just so expensive to be doing all of these things to support our bodies. We have to choose the ones that are the most helpful.
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Keebler
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posted
- Do you have link or specific name for those drops? I'd like to add that to my reference radar and maybe to my medicine cabinet.
I'm not sure how deep it will penetrate but I have read / heard of it for topical application that is supposed to "go deeper" inside for sprains, etc. (Word choice not at my best there.)
And, orally (not those kind of drops, though) for nerve support. I'm sure my regular ND has mentioned that for my brain issues.
It never worked for me years ago as an antidepressant (going gluten-free was far more effective in that regard) so I never looked into it more. Glad you mention this, though, and I'll have to learn more. -
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dbpei
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posted
I don't have any references, Keebler. I'm just going on her recommendation. I wish I knew more. I have a bottle I purchased from Herb Pharm through Amazon. It was 'topical only' and not expensive. It is the topical oil that is supposed to be good for healing damaged nerves.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, that's all I wanted, not research links (I can do that) but the name of the actual formula recommended to you by your LL ND.
Herb Pharm is excellent. Absolutely excellent. Is this it?
It also contains: Calendula flower (Calendula officinalis) &
St. John's Wort flower (Hypericum perforatum) -
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dbpei
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posted
It's the first one, Keebler. Strictly St. John's Wort oil. Glad you found it!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Dpei, the new LLMD I just saw has seen many patients with sudden hearing loss with Lyme and co-infections.
I don't have hearing loss, but my tinnitus also gets increased by everyday noise exposure. I have taken to wearing ear plugs when I use my hairdryer, and ear plugs when I drive long distance.
I find the trucks and motor cycles do a real number on my ears when I am driving and my tinnitus increases. Also noisy restaurants increase my tinnitus too.
My new LLMD believes that many have tinnitus from TBI's and that when you take antibiotics the tinnitus increases due to a herx reaction. Personally I know mine is an antibiotic side affect. He agreed macrolides were problematic but was not so convinced about other drugs.
I have found an excellent source of earplugs - a brand named Surefire which you can get from a number of places online including Amazon. Their EP4's cut out loud decibels whilst allowing you to hear conversations easily, and the EP5's give higher protection.
I have no affiliation with this company, but I use their ear plugs every day now to prevent my tinnitus getting louder from noise exposure and the are so much better than the foam kind. I also use headphones over these if I am vacuuming to protect my ears even further.
These days I keep ear plugs in my hand bag, at my desk, in my car - everywhere where I feel I might need them in case I am exposed to loud sounds.
I wish I knew of a supplement that helped with tinnitus. My doctor told me I should be taking magnesium to help with tinnitus - my levels are low so I am having an epsom salt bath every day now to see if that helps.
I am so sorry you have to live with this condition. I know it is so difficult. Keep us posted if you find anything that really helps.
Hugs ((())))
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Razzle
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posted
If nerve damage is involved, be sure to get enough Vitamin B12. Hydroxycobolamin is probably the best form if you have too much serotonin and dopamine.
Consider getting your COMT and VDR checked - these two methylation enzymes deal with neurotransmitter processing.
A mutation in COMT will slow down the degradation of dopamine, and cause you to be sensitive to too much methyl forms of supplements.
However, if you also have a VDR mutation, it will counter the methyl sensitivity and you would be fine taking methyl forms of supplements.
Please do NOT put essential oils or tinctures directly into your ear!!! Use them topically AROUND the ear, and/or apply to a cotton ball and gently insert the cotton ball into the ear canal.
Molybdenum is needed by the enzyme Aldehyde Dehydrogenase. If one is molybdenum-deficient, even though one's enzyme may be genetically fine, one could still have toxicity from aldehydes (alcohol).
Magnesium, Zinc and Iron are also needed to help the function of the Aldehyde Dehydrogenase (and related) enzymes.
I too have ear troubles but I don't know the cause. I first noticed ringing in my left ear after I started taking Singulair for allergies.
Increasing the dose of the drug increased the severity of the ringing, and going without the drug used to stop the ringing after about 2-3 weeks off the drug.
Unfortunately, my allergies were so severe I had no choice but to stay on the drug. Thankfully, I was able to stop the drug after getting rid of mold in my house (the mold was aggravating my allergies).
But by the time my allergies improved enough to stop the Singulair, the tinnitus was multi-toned (symphony in my ear) and it no longer disappeared after stopping the drug.
I'm sure Lyme is involved, since most of my Lyme-specific symptoms are worse on my left side.
As of late last Summer (after 1 dose of Doxycycline), I've had constant vertigo...again, worse on the left side, so I'm sure Lyme is somehow involved.
I'm hoping further Lyme/coinfection treatment will reduce or eliminate the tinnitus and vertigo.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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dbpei
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posted
Thank you Oceangirl and Razzle for all of the good information. It is helpful! Oceangirl, it is a relief to hear that your very seasoned LLMD has seen a lot of ear problems as a result of Lyme and ABX. I hope it is reversible in those cases!
I also use good quality ear plugs and ear muffs that I purchased through ATA (American Tinnitus Assoc.) when my ears are exposed to louder sounds in order to protect them. But I will look at the info on the type you have. They sound great! I also notice that driving, many restaurants, and motorcycle sounds do a number on my ears!
Razzle how do you know not to put tinctures in the ear canal? My LLND told me specifically to do this. And products are made that are designed to go into the canal. So I am confused (and now also nervous about this!) But I appreciate the info. As we know, doctors make mistakes!
I am positive for mutations with VDR and SHMT1, but not COMT. I have been taking methylated folate and B12. My B12 is in mid range when tested, but folate and B6 are very high. I currently take neuroimmune stabilizer cream by Neuro Biologix. I also have been taking methyl B12.
My dopamine and seratonin levels have both been very high (not what you would expect when you have Lyme...) My current levels of selenium, copper and zinc are also high, but iron and manganese are low.
I wish I knew what this all means and what minerals/supplements or conditions might be contributing to this. I am now just taking a multi-vitamin for minerals and still taking magnesium through out the day. Will be going over everything with my new LLND next visit.
Razzle, sorry you have allergies and must take medicine that contributes to your T. and ear problems. I also have vestibular damage on the same side as my hearing loss. I know the meds can cause balance problems and dizziness too.
Oceangirl, my heart goes out to you with all you have had on your plate recently - and to have to deal with horrible T in addition. It seems like you are handling it very well!
Today is a good day for me because I only have the T in my bad ear. My symphony is much quieter! I had RIFE tx. yesterday and wonder if it helped. I just started this and hope it might be the answer for me. If I learn it helps, I will be posting more about it!
Posts: 2386 | From New England | Registered: Aug 2011
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lymeboy
Unregistered
posted
I also lost hearing in one ear when this all started before I knew I had Lyme. My hearing came back over the course of a few days, but I have had terrible ear problems since. My ears are constantly plugged, as if I am going up in an airplane. I have bad tinnitus and I often get inner ear pain and sound sensitivity.
If my ear issues would go away, I would sometimes forget I had Lyme. I have dental problems too.
I have not met a Doc yet who knows anything about addressing this problem. One of my docs was among the best. But really had no idea what to do about my ears. Suggested allergy meds, which is laughable.
I'm pretty discouraged about my ears. It's been 6-7 years of bad ear problems and I've not been given any good advice about them. I'm starting to believe that It won't go away, and the inflammation will soon cause another bad infection and eventually kill me. Depressing, yes, but I have not gotten one good answer about my ears in 5 years of doctor bouncing, so I am discouraged to say the least. I would give anything to have my ears back.
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Dpei, I am so excited you had a good tinnitus day after the Rife tx.
This sounds hopeful! The fact that your tinnitus does change at times is also hopeful!
Keeping my fingers crossed for you that Rife will work!
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dbpei
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posted
oceangirl, thank you for your encouragement. I am trying to stay hopeful and positive!
lymeboy, I am so sorry to read your post. I totally understand and also have thought along the same lines as you. It is so disheartening to keep going to new doctors, trying new things and still not be getting better or getting any answers.
I strongly suspect that there is a dental connection to my illness also. Not many LLMD's know what to do when the illness seems to be in this part of your body (ears and jaw), wreaking havoc.
Have you considered any alternative therapies like RIFE or Onadamed?
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lymeboy
Unregistered
posted
I would try Rifing if I could afford the machine. I'd try anything really. Lyme treatment has crushed me financially. If I can eventually find a used Rife at a decent price, I will try it for sure.
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Razzle
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posted
dbpei,
An expert giving a presentation on Essential Oils told me to not put essential oils in the ear. My doctor (a Naturopath) told me not to put tinctures in the ear. Both said these substances could burn or damage the sensitive tissues in the ear.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Ellen101
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Keebler
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Member # 12673
posted
- VERY GLAD to see the notes & cautions about essential oils, in case there may be some confusion. Indeed, essential oils are very, very strong and can burn.
St. John's wort oil, as in the item above is not an essential oil. And it's not a tincture, either. Agreed, a tincture is never to be put in ears.
Even with ear drops, often, the instruction is to put ONE DROP ON HALF A COTTON BALL, insert loosely. Or one drop in ear, loosely place a piece of cotton. I found out the hard way that any more than a drop is not just wasted but can build up over time.
I wanted a little more detail and called but they are not able to answer right now. If you ever have a question, be sure to contact the source.
Ingredients: certified organic olive oil & St. John's Wort extractives.
That St. John's Wort extracted oil (which is not anywhere nearly as strong as an essential oil) is still just part of the larger olive oil amount.
This is very different from essential oils.
For essential oils, it takes a ton of plant matter squeezed into like one drop, so the concentration is to the moon. And The bottle should always say "essential oil" and some are never for any kind of topical application even when diluted with a carrier oil.
It is good to know the difference in "oils" and their processing.
Still, some plant oils that can burn may not be labeled "essential" and may (or many not) be but, still, even if in with olive oil or the like, some can also be very strong, too strong for some. (Garlic, Oregano come to mind.)
Most essential oils are not for consumption and those that are, require specific instructions. -
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Keebler
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An essential oil is a concentrated hydrophobic liquid containing volatile aroma compounds from plants. Essential oils are also known as volatile oils, ethereal oils, aetherolea . . . .
. . . Essential oils are generally extracted by distillation, often by using steam. Other processes include expression or solvent extraction . . . . [for use in] perfumes . . . cleaning products . . .
[some mention of aromatherapy]
. . . Today, most common essential oils — such as lavender, peppermint, and eucalyptus — are distilled. Raw plant material, consisting of the flowers, leaves, wood, bark, roots, seeds, or peel, is put into an alembic (distillation apparatus) over water.
As the water is heated, the steam passes through the plant material, vaporizing the volatile compounds. The vapors flow through a coil, where they condense back to liquid, which is then collected in the receiving vessel. . . . -
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dbpei
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posted
Thanks for the info everyone! Better safe than sorry! Wow, what good information on essential oils, Keebler!
Lymeboy, I am sorry for what you have had to endure. It has only been a few years for me, but I can understand how distressing your symptoms must be. I have had them all as well and often question if it is Lyme or something else causing my nightmare.
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